Death from ‘Complications’ of Multiple Sclerosis: The Unspeakable Bits from a Life With MS

When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.

Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.”  When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.

My greatest fear when the dark days have me thinking about MS is that it might get “that bad,” but I must admit that I didn’t really know what that means. What does “advanced MS” look like?  How does MS get to “end stage”? What are these “complications of MS”?

As I stated in my first Unspeakable Bits, I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning. I am only qualified to speak from my personal knowledge and perspective when it comes to this sensitive subject. The Society will bring experts and additional information to address other aspects of the conversation on the MS Connection blog, much in the same way we covered the controversial subject of medical marijuana last month, to help shed light on this dark corner of MS.

It’s important to understand that there are treatments, exercises, medications and devices to help us manage the most challenging MS symptoms – even those that can eventually contribute to death. Being that death is something all of us must face in our own time, it may be helpful to understand how MS might be a factor. That level of complication is relatively rare, but it does happen. Just as I respect the feelings and experiences of those with the mildest forms of our disease, I also feel it is important to recognize and respect the feelings and experiences of those with aggressive forms of MS that can hasten death.

So, what might be some of the “complications” of MS that can cause death?
  • Pulmonary involvement
  • Severe infections, sepsis
  • Aspiration pneumonia
  • Suicide
Pulmonary Complications

A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced MS.”

Severe Infections

One of the hazards of advanced immobility due to MS can be pressure sores (commonly known as “bedsores”). Pressure sores begin as relatively benign problem, but if left untreated can quickly progress to a more serious concern (including sepsis – basically a full-body infection caused, in the case of pressure sores, by bacteria entering via the open wounds). Many factors can contribute to pressure sores; they include immobility or inactivity, decreased sensation, bowel or bladder incontinence and poor nutrition.

Other common infections which can lead to life-threatening consequences include recurrent and severe urinary tract infections (UTIs) and aspiration pneumonia.

Aspiration Pneumonia

Dysphagia – or swallowing problems – can cause food or liquid to be deposited into the lungs. The body sees this foreign matter as an intruder and sends its defenses to work. The resulting inflammation and fluid accumulation can lead to pneumonia.

Suicide

The reported rates of a person with MS taking their own life (or being assisted in doing so) range from just over 6% to nearly 15%. (Editor’s note: these rates are high compared to the general population, and result primarily from the high rate of undiagnosed and undertreated depression in MS. Depression, which is significantly more common in MS than in the general population or other chronic illnesses, is treatable. People who think they may be depressed should contact their healthcare providers as soon as possible.)

I found a wealth of information on advanced MS, but it took some digging. One resource I’d recommend to all of you is a publication called Caring for Loved Ones with Advanced MS: A Guide for Families. My wife and I have read through it several times and now feel better armed to do the advanced work which can be done to 1) understand palliative care, 2) address advanced medical directives and end-of-life wishes well in advance of needing them and 3) mitigate symptoms of depression.

Fear is what drove me to write this blog entry. I feel more at ease knowing just what my enemy might look like and somehow less fearful. I hope the same for you. Now, I’m going to go throw the ball to my dog because all this studying has reminded me that life with MS really is all about the living part.

Wishing you and your family the best of health.

Cheers
Trevis
Tags Caregiving, Healthcare      13 Appreciate this
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Trevis

Trevis Gleason, Blogger

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.  

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    169 Comments

  • Danielle   Jul 30, 2013 10:15 AM
    Thank you for sharing this. When I was diagnosed last year - I had no idea what MS was but when I read of people dying from "complications" I wondered what exactly that was but no one ever went into detail. It's not something I think about but yes, it is present way down on the list of things that I do think of when family/friends ask if people die from MS and really not having a clear answer for them.
  • Amber G   Jul 30, 2013 10:20 AM
    My dad died from end stages of MS. Diagnosed in 1975 & died in 2005. He could not speak, eat or move. His death certificate states he died from ms. People have tried to tell me that ms doesnt kill but it does we need to find a cure.
  • shelly   Jul 30, 2013 11:03 AM
    Well said! Thanks for discussing this difficult topic. My MS is well managed but it is scary when you see reports of people dying from "complications is me"
  • Erika   Jul 30, 2013 11:10 AM
    It is frightening to read this especially as I have also only been diagnosed a year this September... But to be forewarned is forearmed and yes life is for living and not dwelling too much on the negative aspects of MS.. Positive mental attitude is something I firmly believe in.
  • Melly   Jul 30, 2013 11:25 AM
    I'm frightened too. I found out recently I have SPMS, and am surprised at the lack of information available to me to learn more. I felt so well versed on RRMS. My primary doctor tells me MS is not a deadly disease. My MS specialist and I haven't had that discussion yet, really. Vague questions answered, but overall, I have the feeling that I need to find the info on my own regarding the mysterious complications. Thank you for this blog post. It really does address a couple of my biggest fears. I'm sad, and angry and feel lost with so little information, and so few treatment options. Once again, thank you for clearing up some of my questions.
  • Lisa Leverton   Jul 30, 2013 11:26 AM
    Thank you for writing this article. I have had MS for 15/20 years but diagnosed for 10. I would say I am a little obsessed with death. I wrote my death plan earlier this year explaining to my family that I did birth plans for their births it is only right to have a death plan. I want a natural burial and there are certain things that can and can't be done if you are having this kind of burial. Anyway I have researched and written it down and had some giggles along the way when I have told everyone they are going to have to dig my hole because I can't afford to pay the extra money for it to be done for me. Also I have told them no music, no hymns, no black.... going of track here again... I have always been led to believe that you can't die from MS its self without even thinking of complications that could come at the end so thanks again for the information and how to find more. I guess I am going to have to sit down and have this talk with those close at some stage.
  • Robin   Jul 30, 2013 11:48 AM
    Trevis,

    Thank you for the insights into this subject and for suggesting a publication to gain more knowledge.

    I was at a MS seminar last week and I asked the attending neurologist about this same topic. Surprisingly, he stated the same things that you have.

    Thank you for your blogs. They help to continue my MS education and to know that other MSers are wondering and thinking about the same things as me.
  • Andrea R. Hill   Jul 30, 2013 12:28 PM
    Bless you Travis, my name is Andrea and I have MS. Reading your words gave me a sense of calmness (if that makes any sense) I guess what I'm trying to say, it makes me feel good when someone can be so positive. At times I feel so strong, like I can conquer a convulsion or a weakened joint.....and at other times, I just want to pull the covers over my head and not get out of bed. I went from working for the City of New York (NYPD) I was a civilian employee who worked in Roll Call to becoming ill and not being able to work at all and have to live on Disability. Sometimes I feel worthless as if I can't do anything like I use to, so I depend on great family and friends and try not to let depression get hold of me, but it can be hard. I guess I just wanted to say Thank You and God Bless
  • Lisa Sheedy   Jul 30, 2013 12:29 PM
    Thanks for this. I have PPMS, and am now being treated by a pulmonary specialist as well as my neurologist. The scariest part of having both lung and swallowing issues is knowing what is likely to happen, and knowing that all the available scenarios for end of life care are awful. I was diagnosed in 2008, and have had no remission of any type. I appreciate the reference materials in particular.
  • Darcie   Jul 30, 2013 12:29 PM
    Brave soul, thank you. I have always wondered, but have never seen the possibilities listed out like this. Thank you.
  • Edna   Jul 30, 2013 12:36 PM
    Do you have a blog on relationship issues and MS?
  • Sally   Jul 30, 2013 12:51 PM
    Travis-Thank you so much for this blog. It not only informs us, but forewarns us. We now know what specific complications we should watch for. I have swallowing problems and always worried about choking on food, but never gave much thought to aspiration of liquids.

    Thanks too for your always positive posts on the different MS sites. Many of us look at you as not only an authority on living with MS, but also an advocate for all of us.
  • Thelma   Jul 30, 2013 12:55 PM
    You inspire me, Trevis. Many of these thoughts have been on the cusp of my scattered mind. I appreciate the resources and always need something new to feast upon.
    God Speed.
  • Margie   Jul 30, 2013 12:57 PM
    Great info, even if we don't like to hear it. I've seen my MS progress and know its a reality that I must face. Its such a hidden disease, "But you look fine" that I even forget what's happening inside, till I feel (or don't) it! I need to prepare everyone for what's possible to come. Thanks for sharing!
  • Pam M   Jul 30, 2013 1:51 PM
    Thank you so much for this article. I had wondered what the term "complications from MS" entailed, but could find no real information online. As devastating as it is, I feel better knowing more definitive information. Just like I felt when I was diagnosed with MS...sadness but also relief that my symptoms had a name and I could plan a strategy for dealing with it.
  • Teacher With MS   Jul 30, 2013 2:24 PM
    My cousin Charles died from "complications" of advanced MS. He had Primary Progressive MS and lived for 8 years (I think) after diagnosis, but was a quadriplegic for the last few years of his life. He could move one finger on one hand, and could summon emergency services when needed. He repeatedly contracted aspiration pneumonia toward the end. One day his little 8 year old girl had come home from school and was with him, no other adult home, when she suffered a major first seizure. He could do nothing to help except summon help, which he immediately did. I can't imagine, being stuck in my bed while my child was seizing right on the floor next to be, and no being able to help. Eventually, with medication, she's fine. But what a mess it became. Even Child Protective Services got involved The girl was no longer allowed to be at home alone with her dad. That ended up a great deal of money that the family didn't have. (debt creation) (Mom had gone back to work so they could survive). So yes, death from MS can be not the way any of us want to go. And, the years leading up to that death can be incredibly challenging (in many, many areas) and devastating to the MS patient and their family and friends.

    And then, what do we see on TV? "This person has MS, but MS doesn't have him!" ~sigh~ No wonder people say "You look so good!"
  • Rena   Jul 30, 2013 2:54 PM
    Thank you for the information. It helps to know what to watch out for. Diagnoses in 2007.
  • Michelle   Jul 30, 2013 3:19 PM
    Thanks for putting this in black & white. Ive had MS for 12 yrs & now have swollowing problems, often to scared to eat or drink infront of people. I live for now & try to escape when my mind thinks to hard. Crying in the shower seems to be my place, but i think im a strong person & will keep on keeping on. We all have to stay strong, one day this disease will be gone!
  • Susana Alvarado   Jul 30, 2013 3:21 PM
    Thanks for sharing this information, for so long I wanted to know about this topic (I was diagnosed in 2010) but hadn´t the courage to do it. Blessings foru you.
  • Leslie Fridman   Jul 30, 2013 4:14 PM
    Insightful, thought provoking and informative summary of an important subject...answering questions I and I'm sure, all my fellow MSers have asked.
  • sallyeaux   Jul 30, 2013 4:20 PM
    Watching that You Tube video you attached showing Annette's advanced stage of MS was probably the most frightening thing I've ever seen. But I thank you so much for posting it. I was diagnosed in 2005 (PPMS) and have so wanted Facts and all I seem to find are cliches and platitudes about "connections" and living fully and stuff like that. I really, really, REALLY appreciate the straightforward truth. Thank You
  • Rebecca   Jul 30, 2013 5:21 PM
    Thank you Trevis. I enjoyed your blog in reguards to MS.
  • Suzanne Soper   Jul 30, 2013 6:05 PM
    Trevis, Thank you for addressing "Death from MS Complications". I am 63, Dx'd with RRMS 27 years ago, and moved into "Chronic Progressive MS" status about 9 years ago. I have no feeling or use of my legs and feet, can't lift more than a pound, can't turn over in bed, suffer from bedsores, depression, vision problems are worsening, also have swallowing difficulty,and so on. My doctors always said "no one ever gets every possible MS symptom", but I often think I am the only person who is dealing with everything MS can throw at me. I have a wonderful husband who takes care of me totally, but I do worry what will happen if he passes away before me. I fear being stuck in a bed in a nursing home. So thank you for addressing progressive MS, as it seems like all I ever find is info on RRMS and for the newly Dx'd. No one ever wants to even mention that there are people with MS that DO have symptoms and problems that can and do contribute to death. I have every symptom you mentioned as something that can lead to death from MS complications. I have just found your blog but will be reading all you write, from now on. I so appreciate you talking about something other than RRMS.
  • Darlene Dodd   Jul 30, 2013 6:09 PM
    I have Primary Progressive MS. I live in pain every single day. It's been 6 years now. My whole world stopped at a snap of your finger. I started falling, and the pain, had to have help getting in the shower. I have always been a strong person. I have a family that loves me, & would do anything for me. But they will never know how much pain I live in. I know that I will fight this disease till I tack my last breath. I cannot remember from one minute to another. I play games to help keep my brain working. You can't give in to this creature that comes inside of your body.
  • Darlene Dodd   Jul 30, 2013 6:09 PM
    I have Primary Progressive MS. I live in pain every single day. It's been 6 years now. My whole world stopped at a snap of your finger. I started falling, and the pain, had to have help getting in the shower. I have always been a strong person. I have a family that loves me, & would do anything for me. But they will never know how much pain I live in. I know that I will fight this disease till I tack my last breath. I cannot remember from one minute to another. I play games to help keep my brain working. You can't give in to this creature that comes inside of your body.
  • rose   Jul 30, 2013 6:13 PM
    thanks for the honesty
    my daughter died from complications from MS but no one says MS is the reason the immunity declines, swallowing can declining,
  • charles   Jul 30, 2013 6:31 PM
    I just wanted to thank you for this article. I've always (since diagnosis) wanted to know of the MS complications which may lead to an unfortunate end but have been afraid to ask. I always say "don't ask a
  • Charles   Jul 30, 2013 6:40 PM
    I want to thank you for taking the time to write this. I've always wondered about the complications that may lead to an unfortunate end but have been afraid to ask. I always say "don't ask the question if you don't want the answer". So, although I didn't ask, you have helped to enlighten me and I thank you.
  • klaudie   Jul 30, 2013 6:53 PM
    the comments mention the youtube of the video that explain the end where is it ???
  • Arlene   Jul 30, 2013 7:02 PM
    Frightening but necessary topic. Thank you.
  • Mike Russell   Jul 30, 2013 7:20 PM
    Very well though out and insightful article Trevis. Thanks again for teaching us all the important MS facts to beware of.

    I truly appreciate your work and look forward to your articles. Thanks again and be safe
  • Mike Russell   Jul 30, 2013 7:23 PM
    Very well thought out and insightful article Trevis. Thanks again for teaching us all the important MS facts to be aware of.

    I truly appreciate your work and look forward to your articles. Thanks again and be safe
  • Angesexton   Jul 30, 2013 7:42 PM
    I lost a very close friend in Apr of this year. She had placed in the nursing home because she could no longer take care of herself. She went in Jan10. She got a UTI and had to go to the hospital. She passed 3 days later. I have MS as well. It's scary. It's just the unknown. I have my faith in God and I try to always lean on that for peace of mind.
  • Angesexton   Jul 30, 2013 7:42 PM
    I lost a very close friend in Apr of this year. She had placed in the nursing home because she could no longer take care of herself. She went in Jan10. She got a UTI and had to go to the hospital. She passed 3 days later. I have MS as well. It's scary. It's just the unknown. I have my faith in God and I try to always lean on that for peace of mind.
  • Marsha & John Baumann   Jul 30, 2013 8:37 PM
    Death is unknown, yet faith traditions hold that death is only a transition. Those of us who have MS (& our companions) live with the MS unknown on a daily basis. We believe the strength & courage that we have gained already, shall help guide us through end-life issues. The key thing that we read in Trevis' piece was his open communication with his wife. Finding someone - spouse, partner, friends, family who will be a willing companion on the journey of life & death is key in our minds. Our experience is that when we treat life as a series of problems to solve - more problems will emerge. It seems that there are only two choices - we can problem solve our way into misery OR step out and live into the mystery that life (and death) truly is.

    Blessings on your journey,
    Marsha - MS 15 years & John - My companion on the journey
  • Stacy Buzzell   Jul 30, 2013 8:40 PM
    Thank you for writing this, I, like many others have always wondered what the complications were that caused death.
    My father and I both had MS but sadly my dad just recently passed away due to complications and I have really been wondering what this really meant for my future. Thank you again for the info.
  • Patricia   Jul 30, 2013 9:33 PM
    You know being a nurse I understand a lot about neurological disorders. I have the pleasure of having MS. Found out in 2006 that I must have had it for at least 17 years then. So just as the myelin sheet can uncover areas of the CNS related to life, I choose not to be too afraid. Yet these last days are getting rough. Much pain and sleepiness. I at times say good bye to everything earthly before I go to sleep in the event MS snaps something that is vital to my life...like breathing/pulmonary functioning.
  • Cecilia Rich   Jul 30, 2013 10:18 PM
    Thanks so much for this piece! I also feel better facing the truth!
  • Grace   Jul 30, 2013 10:31 PM
    Hello,

    Thank you for answering this persistent question I have had for a long time. I had first bout in 1989, but not diagnosed for sure until 1992. I am still walking and talking but not able to work a 40 hour week, so living on disability. I frequently have the feeling of ineptitude, but i try to focus on what I do well. I'm trying to figure out a way to pay for one of these new drugs. If I go through the donut hole this year, I won't be able to go through it again next year. I want to try one of the new pills and see if I can go back to work. Then, I can get off Medicare and back on "real" insurance. That way, i can afford the co-pay for meds, and put more away for soon-to-come retirement. I truly believe attitude is everything, so I try really hard to find bright spots in my life. I also truly believe that we MS'ers are on the cusp of a cure. I expect it any day on the front page. I have plans and goals that are not as grand as they once were, but they are still there, and I'm going to try my hardest to make them happen!
  • Cathy   Jul 31, 2013 6:42 AM
    My grandmother died before I ever met her at 51 of complications of MS - congestive heart failure. She also though was stumbling a lot and had double vision from time to time. This was back in the early 60s.
  • Paula Wright   Jul 31, 2013 7:53 AM
    Just left the hospital two weeks ago after treatment for UTI. Had 106.5 F while in hospital. Still on Cipro until the end of this week. Running a low fever at night 99.7 F last night. 99.2 this AM. Don't know if I'm better or worse? But when it's time I'm ready, but not yet!! I'm 56 7 I'd like my grandsons to know me a bit better first. & I'd like to see them grow up, too!!
  • Linda De Maria Schierberg   Jul 31, 2013 9:22 AM
    I have been told by my dear freind's husband said "she doesn't have MS". Sometimes I feel guilty parking in a handicap when feeling pretty good considering. I know that by the time I come out of the stores likely carrying stuff I will be very sore and achy and happy the car is close. I walk very slowly. I am lucky with my mild symptoms it is said but sometimes I wish my Neuro had MS too to understand the acute pains exhaustion and so forth. I also did see the video of poor dear Annette F. and it horrified me. I am 50 had it diagnosed over 10 years ago although likely had it longer. Sleep is hard, meds, many tried, along with fibromyalgia some days I push through but others I have to drop. I was a very active sports gal, married srill over 23 years but no sex anymore but great love between us anyway. Why not, pain, and believe me my tolerance level is high. I shall eead what others say. I normally never do this or read MS books too deeply since I can still walk with or without a cane, just slowly and drive. Yes I am scared but I am here for a reason what's left of the old me. Depression always chases me but so far I am ahead of it. I can't ride horses anymore which really hurts. Heck I couldn't run or skip either. Stairs, curbs and hills are exhausting.
    ! am over weight from lack of exercise because of what else pain! I am careful not to talk about it because even friends should not have to hear boo hood for I am not ever going to be told I am also a hypochondriac. No pain management will concern themselves I and drug seeking for I am seeking relief from pains ! only. Will somebody maybe a woman like me tell me how they think and feel?
  • Martha Levy   Jul 31, 2013 10:20 AM
    Trevis, this scares me a lot, basically since it is just my Husband and I we don't have family around, and my Husband has his own health problems, I can see this is going to have to be something we are going to have to start making some kind of decision about.
  • Avatar
    msbendy  Aug 2, 2013 1:58 PM
    thank you so much for sharing this I will be following you on facebook as well I really need this info to ease my mind!
  • Sharon Korte   Aug 10, 2013 3:55 PM
    I think if someone has an advanced stage of any dehabilitaiting disease or condition they should be approved to be quietly put to rest.
  • Tommy V   Aug 10, 2013 11:06 PM
    My wife died from "Respritory Failure" due to MS in 2004. This video brought back many sad and desperate memories of helplessness I felt as it depicted her condition so closley. MaryAnn was diagnosed in 1975. Chronic Progressive MS, always worse, no remissions. Painfully slow, downward spiral. Impossible to describe. Heartbreaking...
  • Carolyn   Aug 14, 2013 1:23 PM
    I hope this is the beginning of opening discussion about this topic that makes us (me) uncomfortable .
  • Karen   Aug 22, 2013 10:30 AM
    Lyme disease and multiple sclerosis may have <something> in common
    The link below is an interview that discussed Lyme disease. Interesting!

    http://youtu.be/gW8CqR8PGWw
  • Karen Walker   Aug 22, 2013 3:51 PM
    Thank you for this. I was able to piece together the end after years of reading but no one, not even two neurologists I had an open communication with, would even respond to my emails of I'm at EDSS 8.5, what can I expect here on out.
  • leavingsoon2013  Aug 31, 2013 10:29 PM
    PLEASE LET THIS BE HEARD. I HAVE TONS OF STORIES TO TELL. BUT DON'T WANT TO RE-LIVE THEM. PLEASE LET PEOPLE KNOW WHEN THE TIME COMES, THEY WILL KNOW. BUY THE BOOKS 'FINAL EXIT' OR THE "LAST FIVE ACTS". SO THESE PEOPLE WONT HURT THEMSELVES! PEACE CAN HAPPEN
  • jude1234  Sep 18, 2013 11:49 AM
    I understand how you feel being in pain daily. I have had MS for 5 years. I do not work anymore , on disability, I cannot run , or jump. I sometimes have difficulty swallowing. Weird!! numbness in toes and fingers, painful knee and limp on my leg. vision is not good at times . Mouth pain jaw is bad daily . MS is a killer . It will get you . I got thru many trials but MS got me . MS you cannot beat , no matter what kind of sugar you place on it . M S is bad news .
  • Victor Bernal   Oct 9, 2013 10:57 PM
    Dear Trevis

    My wife passed away at 24th June of this year. She suffered from SPMS from 10 years ago. Some of the dangers that you mentioned can be prevented and avoided other. My wife had bedsores. The doctor recommended a mattress that had tubes alternately inflated and deflated with an electric air pump, and this way avoid pressure in a single part of the body.

    We do not buy it because we though the noise would not let her sleep.
    Instead we made her mobilization exercises, her muscles redeveloped. When she returned to have buttocks, sores disappeared.

    Also exercises prevented abnormal articulation bends and that saved him a lot of pain. My wife’s muscles was so similar to that of a normal person, especially in the legs to the extent that the doctor thought she could walk again. It unfortunately did not happen.
  • Becky   Oct 11, 2013 6:07 AM
    My dad passed away yesterday he had Secondary progressive MS. He developed a chest infection and my mum spoke to him in the night and he said he was ok and a few hours later he was gone. Regardless of the medical cause of death I genuinely believe my dad just wanted to be at peace. He really struggled with all the things MS robbed him of, he started losing his ability to walk a few years ago and then he started getting weakness in his arms. I think the final straw was when his sight deteriorated and he was finding it hard to swallow. My thoughts are with all those who have MS and I hope that the research that is on going leads to a cure/treatment to rid the world of this horrible disease.
  • casey   Oct 14, 2013 8:51 PM
    My mom had MS. She was diagnosed in 07 I think. She lived very well with it, until this past year when she began having trouble walking without a walker. About three months ago, she passed away. It started with pneumonia, then the doctor told me that her MS caused it to become ARDS. This ultimately deprived her body of oxygen, even on a ventilator. I had no idea that something as simple as pneumonia would end up being... The end. I guess knowing wouldn't have helped me, maybe just prepared me a little bit more. Her death certificate said "complications of MS". Guess I know it's real now.... For the record, I don't believe I have MS, but I'm only 25. She died at 52.
  • Bob   Oct 24, 2013 10:19 AM
    thanks for this blog
    my wife has been bedridden with progressive MS for almost six years, I have worked part-time for those years but now I find I have just had enough. I know I can get respite but, a few days away doesn't help in fact it makes it worse. I just want to lead a normal life, I am 55 and feel I need to do things for ME now I've cared for her for almost 20 years. Now I don't know if I even love her anymore and feel resentful. Extra care in the house wouldn't help me either because it's just the everyday living, and caring, feeding, toileting, tea making, boredom .... etc etc. If I bring up the subject of a carehome it is totally ruled out by her. I can't go on like this for much longer
  • cathy   Jun 7, 2015 4:41 PM
    Thank you for your recent blog entry
  • Jim   Jun 12, 2015 3:34 PM
    Thanks for posting this. I was dx'd RRMS 15 yrs ago, not sure how long I have had it. I am Watching a friend who was dx'd the same year with PPMS. He is no longer in his home, bedridden, non-verbal for the most part, lots of UTI's, a few lung infections etc. I have met a few newly dx'd and they really seem to have no idea what can be waiting around the corner.
  • Jim   Jun 12, 2015 3:34 PM
    Thanks for posting this. I was dx'd RRMS 15 yrs ago, not sure how long I have had it. I am Watching a friend who was dx'd the same year with PPMS. He is no longer in his home, bedridden, non-verbal for the most part, lots of UTI's, a few lung infections etc. I have met a few newly dx'd and they really seem to have no idea what can be waiting around the corner.
  • Krystle   Jun 17, 2015 11:48 PM
    My father had primary progressive MS. He was diagnosed in 2001 and didn't require a cane until 2006. I was lucky enough to dance with him at my high school graduation in 2008. In 2012, he broke his foot and even with physio, he now needed a walker. My mom and myself took care of dad at home with no home care. In 2014 he went for a simple sinus surgery and had major complications which required bed rest for two months. Even with constant physio after, the hospital said he wasn't safe at home even with home care. So we had to take my dad to a nursing home. The nursing home was so inadequate and we were put on a waiting list for another one. This past April my dad died from a bed sore at the nursing home. I am furious with the home for letting his bed sore get so bad it turned septic. They basically killed him. I advocated so much for doctors to see my dad, for his ms doctor to be contacted. I had to request urine tests because I knew his symptoms when he had a UTI and they wouldnt do IT! Then we thought dad had a stroke but they wouldn't do a mri or ct scan because IT won't help his outcome! They constantly over medicated him and almost daily I had to go through his charts. They kept throwing anti psychotics at him. I'm so sad that my dad had to go through this. This disease is horrible. If you are a caregiver make sure you have a good support system and always advocate for your loved one.
  • Debbie chard   Jun 22, 2015 1:29 PM
    I am a 50 year old mother of 2 kids age 21 and 22. I've had relapsing remitting Ms since I was 16 and had the odd day of not feeling too good but was quite unaffected until i reached 45 and then developed secondary progressive m s . I am unable to walk outside and have to use a wheelchair, can't write, drive or work anymore. Have carers in 3 times a day as can no longer cook, dress or shower myself. My life is very different now just have to remember the good 45 years I had.
  • Regina Rebb   Jun 30, 2015 10:27 AM
    Thank you so much for your words of encouragement.
  • Cynthia alvarez   Jul 5, 2015 1:29 PM
    Thank you for writing such a thoughtful and straightforward piece.i had relapsing remitting m.s and was recently diagnosed by m neurologist that it is no secondary pogessive.During an overwhelming the your own letter was wonderful.thank you for your continuous work.
  • Peggy Rasberry   Jul 9, 2015 5:12 PM
    I an interested in knowing more.
  • MPascale   Jul 16, 2015 9:29 PM
    I went into an ms specialized house a few months ago. TERRIFYING. Can tell u ms is a deadly disease. In my case : dead legs, disappeared sphincters,difficulties with locution, awkward hands, unable to eat alone etc.; Who is me ?
  • MPascale   Jul 16, 2015 9:29 PM
    I went into an ms specialized house a few months ago. TERRIFYING. Can tell u ms is a deadly disease. In my case : dead legs, disappeared sphincters,difficulties with locution, awkward hands, unable to eat alone etc.; Who is me ?
  • Cheri   Jul 21, 2015 11:19 AM
    Thank you for bringing up the tough subject of death. We're all going to die someday but some of the difficulties of M.S. make the question surface sooner than others. I was diagnosed 24 years ago with RRMS. At first all I thought about was how much longer before I die. (I was a single 34 year old mom with 2 small children.) Now my children are grown and I have 4 grandchildren and I wonder more about how much longer am I going to be willing to live like this.
  • Anderson   Jul 22, 2015 5:56 AM
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  • Connie Pizzo   Jul 27, 2015 7:45 PM
    Thanks so much for being the honest voice that answers all the questions that the MSers have and so many people trip around & avoid. It's so important to know what to look for & how to tell loved ones & family members what to expect. This is so important for us to know so we can plan our lives & how to leave them. You really made a difference.Thanks.
    Connie July 20, 2015
  • Peggy   Jul 30, 2015 10:10 PM
    i am 67 years old and was diagnosed with primary progressive MS when I was sixty. I do what I can to prevent a painful death. I cannot walk but I exercise. I have lost my appetite - nothing tastes the same anymore - but I try to consume an adequate amount of food every day. I have bladder problems. For that I drink as much water as I can so that my urine is clear. I have recently been prescribed a daily antibiotic to prevent bacteria from traveling too far. I have recently been told by a young doctor that my bladder is "colonized" with bacteria. But another doctor told me that it is best for me to empty my bladder completely, therefore it is good to use catheterization. So I do that several times a day. My bowels give me little warning when they are about to empty, so I keep a commode by the side of my bed. Probably the most important thing is that I found a man who loves me and takes care of me. He is with me every day. In exchange, I give him all the material wealth that I have. I have paid off his mortgage, bought him two cars, paid for the installation of a new air conditioning and heating system, and am giving him whatever he wants of my belongings. We never talk about this exchange but I know he would be unhappy if I could not provide for him. It is just plain luck that I found Ron and that I can pay for him. He has worked hard all his life and continues to find work for himself around the house.He cannot not be working around the house all the time. If he hadn't found me he would probably still be working long hours at a difficult job from which he could not escape. If I hadn't found him, I would have found a way to kill myself before now.
    Thanks for the blog.
    Peggy
  • Jukie   Aug 14, 2015 8:27 PM
    Thankyou for this site and the information contained in it
    My brother had MS, he passed away almost 3 years ago now.
    Because it was an unexpected death at home an autopy was preformed it took 3 mths to get a cause of death. The results were inconclusive , however more tests were done, as a result the cause of death was pneumonia. He was 62.
    There is a history of empyhesia in the family, our grandfather, father,brother & uncle all dies from it, ages 62 to 70.
    I miss him everyday but I understand better what happened after reading the information on your site. Im glad he passed before he reached yhe emd stages of this terrible disease. I pray one day there will be found a cure for this terrible disease.
    Thank you.
  • mike   Aug 16, 2015 2:04 PM
    i have heard the the words "it's not fatal" from the day i got my DX in 06, and from every neuro/ms specialist since...and i read it in every article written about MS. but i found out the truth in 2008, when i read a study done in denmark "Underlying cause of death in...multiple sclerosis...", which clearly contradicted every "it's not fatal" statement i have heard and read. the fact is, MS IS FATAL. you will take a pretty long time do die from MS, but you WILL die from MS...unless you die sooner from a lightning strike.

    look, it's simple, MS will cut your expected length of life by 7-10 years, at lest that is what the current number is. the truth is that is could be worse, since in many cases of death for people with MS, death is usually attributed to something else, like a car crash.

    so why do doctors lie to you and tell you MS is not fatal? because it is semantics, which allows them to say it's not fatal, because MS will not kill you, but the complications will. sort of like saying a gun does not kill you, but the bullet fired from the gun does kill you. but even in use of semantics, the doctors are wrong...the danish study found that:

    of 8,142 MS patients, 2,803 died from MS or complications, that's a 34% death rate.

    the causes of death listed, by % were as follows:

    Cardiac and vascular diseases 17.6%
    Cancer 8.6%
    Respiratory and infectious diseases 5.1%
    Other natural causes 9.5%
    Accidents or suicide 3.8%

    and here is the lie

    Multiple sclerosis 55.4%

    yes, MS is listed as cause of death in 55% of the cases...so how can your doctor tell you that MS is NOT fatal? do they not bother keeping updo date on MS studies? most don't, but the fact is they will still tell you it's not fatal because you will not dies in the next 5 years, or even 10 years, so how can they say MS will kill you if they can't say how or when it will kill you.

    the sad part, is that the lie about MS being fatal is doing us great harm. when doctors and experts downplay the fatality of MS, they take away a sense of urgency needed to find treatments or a cure. for many of us with MS, the fatal aspect is irrelevant, because with are tortured by MS on daily basis, and all we want to stop the torture. I have accepted that i will fie from MS at some point, but all i want I JUST WANT TO IMPROVE THE QUALITY OF MY LIFE, that's it. i beg the MS related medical, research, and advocacy communities, please stop telling lies about MS, please make an effort to find a way to help us enjoy the life we have left. please find a way to put out the wet and freezing fire inside my feet, and that alone will improve the quality of my life by 100%...really, i can live with the other dozen or so symptoms, but not with the fire. the worst thing about knowing the truth about MS, is that i know that no matter how bad it is for me, there are so many that have it WORSE.

    again, MS IS FATAL, but so what, life is fatal and you will die from something at some point, even without MS, you will die at some point, but you live your life anyway, and that's all we with MS want to do too, just live our lives.

    but i think i'm living in a fantasy world thinking they will help us. the experts don't even know what MS is, what causes it, how it works, so how will they ever be able to treat or sure something they know NOTHING about. i do wish they would stop teasing us with all these stupid treatment/cure studies that go nowhere. who cares about the studies that shows MS rates are higher in colder regions, who cares that about study that shows vitamin D "MAY" be involved in MS, who cares about all those stupid mouse models.

    a few years ago i came across a medical journal that stated "what causes MS is unknown, the process of MS is unknown, there is no current cure for MS", the same thing my neuro doc told me in 2006, almost verbatim, which is odd considering that journal i saw that in was dated 1908...1908

    btw...te multi billion dollar MS drug industry is another huge lie...even the drug companies own data says that, at best, 20%-30% of the patients show any difference from taking their drug, and that difference is a 50% reduction in "relapse rate"...and we all know that "relapse" is subjective. I was in a drug study a few years ago, and i was told to let them know if my symptoms worsen, which they did, but when i went in, i was told it is NOT a relapse...UM, it IS a relapse, i think i would know, and if they would look at the definition of "relapse" they would see that i had a relapse...but my relapse would not be good for their study results, so was it a "relapse" or was it not...depends on who you ask, and if you ask me, i will just say "you know the deal".

    it sucks living in no man's land, while our guides are chasing unicorns. the worst day in my life was getting the MS DX, but not for the reason you would think, but because on that day, I LOST MY NAME, I LOST MY IDENTITY, as i was dropped in a BUCKET CALLED MS.
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  • B R   Sep 19, 2015 3:38 AM
    I suffered a few years before I got diagnosed. My wife left me, because apparently she didn't mean it, in the part of the wedding vows sicker and poorer. I wouldn't wish this disease on the most horrific of people. I know my time here is short, because I have issues with my breathing. If that doesn't get me, then I will take care of the issue myself. I have suffered alone and in poverty. I used to be financially very well. Happy marriage. This has taken Everything and I just don't have anything left. Good luck to all who suffer from MS. I am quitting
  • Laura   Sep 26, 2015 10:03 PM
    I have had ms for about 20 years. For me the best way to deal with my ms is to not think about it, go on with my life as though I don't have it. When I have bad day, horrible days, well I just think of those as a speed bump. It may slow me down a bit, but I keep on going.
  • Preston Lucas   Sep 28, 2015 10:08 AM
    My experience with my wife of 50 years who passed away at 81, who's MS was 1st. found after being unable to move after a visit to a neurologist due to severe inflammation in her brain was that she recovered into a phase of relapsing MS. We between her Physician and me were able to give her several years of on and off MS by treating the eruptions with Predisone.

    After about 10 years She chose to go into a Nursing home to spare me of the constant care, where she lived a cared fore life for another 8 years and I was by her side for most of the noon and evening meals.

    The end of her life came when she was no longer able to swallow food, and we both knew that the end was near, because we had both agreed that neither of us wanted to continue living with feeding tubes etc.

    Because I was certain that I did not want here to suffer in her last days, I contacted Hospice and they responded within hours to apply morphine tapes, that put her in a sleep like trance and she passed away in her sleep with out any signs of pain.

    Since we both knew that her end was near when she could no longer
    swallow, my only regret is that I did not ask Hospice about the procedure and was not able to have a meaning full good by and tell my wife how much she meant to me.

    I am sharing this because in all of my searching, I was not able to find and end of life with MS for this true reason. And that in most cases of MS deaths, the death certificates do not mention MS. Instead they attribute the death to a medical term, so that MS may not get the National attention it should have as a disease and a need for finding a cure.

    Also for educating those with MS and their loved one for one of he causes of death from the disease.

    Thank You. Preston Lucas
  • Victoria Glover   Oct 13, 2015 1:51 AM
    I have recently lost my younger sister
    59yrs old to aspirated pneumonia
    She was admitted to the ICU unit
    She was adamant about not being
    ventilated. Put changed her mind
    When her Dr gave her 3 choices
    1.stay on the15 units of oxgyen
    That will eventually destroy your
    Mind
    2 Put you on the ventalator for 72 hrs
    I can try and suction some gunk out
    of the one lung
    3 We can put you on morphine until your heart
    Goes out
    She chose the ventilator after 72 hrs nothing had
    Changed so she was moved to a private room where
    We as family could talk and laugh with her
    That lasted one day. The next day she didn't talk
    She mouned and grounded a lot she would only say
    Oh My God Vickie I would comfort her as much as I could
    She died peacefully that night at 10:00 pm our
    3rd sisters birthday
    Rip my sister there were 4 of. Us now 3
    I could tell so many stories of me and Lory Pittman we were 11 months apart
  • Tricia Cappiello   Oct 17, 2015 1:54 AM
    I was diagnosed with ms in 2002 .I have RRMS I have slurred speech,can't write script somewhat I can write legible very rare in print I have frontal lobe lesions,bladder problems migrains.Initiall attack I was numb tingling since then on n off,facial attacks I at those times can't talk at all but thank God it reversed .Blurred vision,stomachs problems gait becomes unsteady at times lately also I been wondering why I'm getting light headed I know it's ms but it didn't go away for about 2 wks.With so much knowledge I have of ms I'm wondering is this RRM? I've had infections they hand me amoxicillin .
  • Jamie   Nov 4, 2015 10:33 AM
    I just found this page and I'm glad I did. I've had MS diagnosis since 1998 and avoided any and all information about the progression of MS because I just didn't want to know. But here I am 17 years later and suddenly in the late stages of my disease. I didn't think it would happen to me, I just went with the flow of knowing I have it and dealt with it as it came up, but in June my neurologist reclassified my MS to Secondary Progressive. In late July I started getting sick with what I thought was a just a cold. Normally I don't get sick with colds and knew this was different. Here it is November and I'm still battling with my respiratory system. I became very ill very quickly and doctor visit after doctor visit, multiple prescriptions later, I'm still not well. It's actually what lead to me to look into the end stages of MS because there were some points in time where I did believe I was going to die, my lung congestion wouldn't break, my cough wouldn't stop, and the weakness it created was terrible. I'm not afraid of dying at all, but it's this long term suffering through the years, and now this respiratory infection I can't quite shake that made me look into my issue a bit more. It appears that I am starting to experience these end stage illnesses. I knew something was very wrong with me. I just didn't know that these are the actual symptoms I'm starting to experience very rapidly. It's barely controllable and only someone with MS can understand, even the MS Society doesn't do justice to explaining how a person with MS really experiences life on a day to day basis. Doctor's only mimic what they've heard from patient's, they don't know the true experience of living with it. What I'll never understand is why there is no cure for it. Millions for research and not a bit closer in finding it's true source and correcting is just mind boggling. I wish anyone with MS to have the best life possible. I had a good run, but it's the misinformation about the suffering we rarely read about.
  • Katharine Colton   Dec 3, 2015 12:22 PM
    Hi,
    My name is Katharine Colton.'
    Yes, Im giving my full real name because I want you to know me.
    Looking back I believe I started showing symptoms in my 20`s.
    It was being tired and weak some times. But not all the time.
    I had trouble holding my child in my arms while standing.
    I atributed alot of that to just being a busy mom.
    In my late 30`s I suddenly lost sight in my left eye.
    I was divoresd and single, working in factory`s building auto parts. ( Michigan)
    I had health insurance through work, but the pay was low and the deductable was to high to see a doctor.
    I couldnt afford to take a day off work to see a doctor.
    I started tripping over my right foot as if I couldnt feel to pick it up high enough to step.
    I used to be a jogger and do arobics, but I had to stop doing it in fear of breaking a leg or arm.
    Around my 40th birthday I awoke one morning paralized on my whole right side.
    I had No feeling at all in my right arm and hand, right leg and foot.
    I was still able to walk but had to touch the walls or what ever I could hang onto for balance.
    I could Not walk in the dark or uneven ground or even on the beach.
    I could Not hold anything in my hands without dropping it.
    I learned ( self taught ) to feel with my eyes.
    I found as long as I keeped sight of the ground or my hands I could manage somehow to accomplish what I needed to do.
    I was fired from my factory job for obvious reasons.
    I did however see a doctor a few times and he said I had 6 pinced nerves.
    I was going to a chiropractor and that seemed to help a little.
    I had to have my parents pay those bills for me.
    Unable to find employment I stumbled upon the knowledge that I was a really great sales person.
    I got myself a DBA ( Doing business as ) licence and became self employed.
    I now made fantastic money working for myself promoting sales. ( Marketing )
    For the next 14 years I traveled all around Michigan, Indiana, and Illinios
    promoting sales.
    My out going personality and winning smile saved me, or so I thought.
    I was now seeing doctors and neurologist`s at great out of pocket expence to gain much needed medications for cramping and stiffness.
    Also with the traveling around I had to live in hotels but still pay bills and pay to have my home maintained while I was gone.
    I eventually start living in " Work " apartments instead of hotels.
    Untill my contracts fizzled or was no longer worth my time.
    Still traveling around to better contracts.
    I ended up in a " Work " apartment in Illinois.
    This is where the MS took me totally down.
    I had to sell my car because it was to dangerous for me to drive.
    Several times my foot locked down on the gas peddle unable to get it off.
    I came very close to killing myself and or others.
    I was struggling to walk even with the aid of a walker.
    I couldnt even carry a purse becase it was to heavy and missed up what little balence I had, even while using a walker.
    People, even strangers were telling me I needed to get help..
    I was so afraid.
    I only had myself to depend on.
    How was I going to pay my bills ?
    When I finally let go, Only because I just couldnt do it any more.
    I searched for help.
    And I found it. Just in time.
    Thru the Springfield Independent Living Center they showed me the tools I needed to get help.
    I am 56 years old now.
    I collect Socail Security / Disability... ( only $1000. a month ) thats to pay rent and utilities and taxable items like T.P. , laundry soap and cleaners (also dog food and bird seed. hey, I like to feed the criders out side :) ) Oh and the bus cost $5.00 round trip to anywhere I need to go.
    Also I recieve about $100. a month for food.
    Money is Very tight.
    I still have to ask help from my 82 yr. old Dad.
    That has Got to Stop.
    Im to the point in my MS where I must use a power chair at all times.
    Im having troubles swollowing.
    Alot of pain, I fight depression.
    Its very difficult to shower wash myself and espically my hair.
    I of course have a shower chair.
    Im still trying to maintain my independance as much as possible.
    I have a lady that comes 3 times a week to help with house keeping, Laundry, shopping.. ect
    My mobil home in Northern Michigan burned down so I lost everything that I worked so hard to keep.
    And I have no home to go home to.
    I am
  • Erica   Dec 22, 2015 3:42 PM
    Thank you for sharing. My father has chronic progressive ms. I have had a hard time find information on this type of ms and was wondering what the end stages would be like. He is currently paralyzed from the neck down and I just want to do everything I can to be supportive.
  • debora   Jan 2, 2016 8:44 AM
    Thank you for sharing. My mom has progressive ms for 34 years. She is now 82 and has been totally immobile and bedridden for the last 15 years. My dad is the primary cargiver at 86. She just recently was released from the hospital after a week stay fighting a uti, aspiration pneumonia, and a blood infection. She was sent home with a pick line for antibiotic treatment. My sister and I are the only other care givers part time since we both have go work full time for our families. my dad refuses outside help since they do not meet his standards or puntuality. This is her first infection other than past uti. We always wondered what endstage ms would mean for her and i suppose this is the first glimpse of it.
  • Terry Greig   Jan 4, 2016 9:01 AM
    can we make sure our loved MS victims die at home in bed?
  • Crista   Jan 14, 2016 9:02 AM
    Thank you for saying this as clearly and simply as possible. I have been trying to figure out death by MS since my diagnosis in December 2014.
  • Scarlett   Jan 14, 2016 9:47 AM
    I'm 29 and I was diagnosed last April, I've been in and out of the hospital, I've had several relapses, I have migraines daily, problems swallowing, several UTI's and a have a horrible pain in my lungs area, is this considered inn your opinion an MS complication? Thank you!! GBY
  • Jodi   Jan 18, 2016 3:55 AM
    My Amazing Dad had a rate form of Ms , He passed away Christmas day in the Hospitol 2015 . He spent 20 years quadriplegic in a wheelchair, he have bed sores that had turned into Leg am*****tion, then got colon cancer on top of that, got part of his colon removed, eventually ended up having to go back in to get the whole colon removed, but during the surgery aspirated and got pneumonia, also the abdominal stitches had come out and there was a leak into his abdomen, causing him to become septic. My dad asked to be taken off of life support at that point. They need to find a cure for this disease it is horrible and so hard to let your love ones go through it, I pray that no family has to endure what went on, or a person has to endure for that matter what my dad did he is the strongest man that I've ever known and I will love and miss him forever
  • Reva   Jan 22, 2016 10:09 PM
    I was recently diagnosed with PPMS, although I've had it for some time. I'm impressed with how informed you are. I, too, make it my business to be informed and I appreciate your diligence and dedication to do the same for so many others. I'm intrigued with the statistics of "only 10% of patients who are diagnosed with PPMS", yet from what I see here in the comments, the numbers appear to be far higher. It would be interesting to know the actual facts of the matter. Prosperous travels to you, Travis. I pray you do enjoy your life and every day thereof. We only have one. Perhaps we will be able to use ours to help others endure this dreadful disease. Godspeed.
  • Joe Barney   Jan 24, 2016 1:58 PM
    Had rr ms for 31 years ..joe I'm 62
  • Joe Barney   Jan 24, 2016 1:58 PM
    Had rr ms for 31 years ..joe I'm 62
  • Randall hurst   Jan 27, 2016 4:28 PM
    Thanks for sharing, this disease we call MS. Really sucks! From people seeing you once every two to four months and say oh he looks great . But they don't see all the meds, and days and weeks in bed / house because you can't move it hurts to bad! Or the depression really gets dark!! I used to be the life of the party years ago , now I wonder sometimes do I even exist! This disease really can destroy you ! It's a daily battle for me! God bless !! From Lubbock Texas
  • Randall hurst   Jan 27, 2016 4:28 PM
    Thanks for sharing, this disease we call MS. Really sucks! From people seeing you once every two to four months and say oh he looks great . But they don't see all the meds, and days and weeks in bed / house because you can't move it hurts to bad! Or the depression really gets dark!! I used to be the life of the party years ago , now I wonder sometimes do I even exist! This disease really can destroy you ! It's a daily battle for me! God bless !! From Lubbock Texas
  • theresa redden   Jan 31, 2016 7:31 PM
    It sucks. U try to keep in. On.... then lose..memory. lose. Your. Self...just sic
  • theresa redden   Jan 31, 2016 7:31 PM
    It sucks. U try to keep in. On.... then lose..memory. lose. Your. Self...just sic
  • Connie Thornburg   Feb 11, 2016 9:35 PM
    Thank you so much for your help in learning more about this disease . I am a Social Security Rep. I took on the case of a young 36 year old woman today . I was concerned about her life expectancy . She had very little health care from not having insurance . She was diagnosed by the age of 13 . The doctor advised her and her family to let her live her life to its fullest . For the last 10 yrs. she has progressively worsened. Your article had helped me to understand more about her and the symptoms she is having now . Her daddy died 7 years a go from this same disease . Thanks again Trevis you have been a blessing to me by your personal story & your research . God Bless You, Connie Thornburg
  • Marta Manson   Feb 22, 2016 11:33 AM
    Having SPMS, being 52 and having had MS since I was 12 I am so fed-up and depressed about everything about it. Why can't we have stem cell therapy offered to us at a much lower cost. Yes, I'm feeling sorry for myself,but they do say suicide is painless
  • Marta Manson   Feb 22, 2016 11:34 AM
    Having SPMS, being 52 and having had MS since I was 12 I am so fed-up and depressed about everything about it. Why can't we have stem cell therapy offered to us at a much lower cost. Yes, I'm feeling sorry for myself,but they do say suicide is painless
  • Lost and dying   Feb 24, 2016 12:09 PM
    I am with the VA Medical Center, 6 years ago laying in a hospital bed alone and scared 5 neurologist came into my room and said you have brain damage or MS and walked out after a spinal tap with no medication 3 days later they said it was brain damage. 3 years later after getting the classic MS hug I went to an outside neurologist spending lots of money to get a diagnosis of PPMS. Not being able to afford this care any longer I took that diagnosis back to the VA Medical Center but they refuse to acknowledge it. So I'm dealing with these symptoms one by one and I'm at a complete loss! They are treating the symptoms but not the PPMS! However even the gabapentin is not controlling the MS hug anymore and oh well I have been told. I have neurogenic bladder, when I got diagnosed with that I was thrown catheters and told that's what I would have to do the rest of my life don't know why have a good day, no more follow up. I have complete muscle atrophy, when that happened I was given an electric wheelchair and told to have a good life. I could go on and on like this but you get the point. This is common practice in the VA medical centers. Not necessarily with MS patients just the quality of care. I'm just inquiring is there anywhere I can get help because I am in that 6 to 15% now. Please help!
  • Lost and dying   Feb 24, 2016 12:09 PM
    I am with the VA Medical Center, 6 years ago laying in a hospital bed alone and scared 5 neurologist came into my room and said you have brain damage or MS and walked out after a spinal tap with no medication 3 days later they said it was brain damage. 3 years later after getting the classic MS hug I went to an outside neurologist spending lots of money to get a diagnosis of PPMS. Not being able to afford this care any longer I took that diagnosis back to the VA Medical Center but they refuse to acknowledge it. So I'm dealing with these symptoms one by one and I'm at a complete loss! They are treating the symptoms but not the PPMS! However even the gabapentin is not controlling the MS hug anymore and oh well I have been told. I have neurogenic bladder, when I got diagnosed with that I was thrown catheters and told that's what I would have to do the rest of my life don't know why have a good day, no more follow up. I have complete muscle atrophy, when that happened I was given an electric wheelchair and told to have a good life. I could go on and on like this but you get the point. This is common practice in the VA medical centers. Not necessarily with MS patients just the quality of care. I'm just inquiring is there anywhere I can get help because I am in that 6 to 15% now. Please help!
  • Lost and dying   Feb 24, 2016 12:09 PM
    I am with the VA Medical Center, 6 years ago laying in a hospital bed alone and scared 5 neurologist came into my room and said you have brain damage or MS and walked out after a spinal tap with no medication 3 days later they said it was brain damage. 3 years later after getting the classic MS hug I went to an outside neurologist spending lots of money to get a diagnosis of PPMS. Not being able to afford this care any longer I took that diagnosis back to the VA Medical Center but they refuse to acknowledge it. So I'm dealing with these symptoms one by one and I'm at a complete loss! They are treating the symptoms but not the PPMS! However even the gabapentin is not controlling the MS hug anymore and oh well I have been told. I have neurogenic bladder, when I got diagnosed with that I was thrown catheters and told that's what I would have to do the rest of my life don't know why have a good day, no more follow up. I have complete muscle atrophy, when that happened I was given an electric wheelchair and told to have a good life. I could go on and on like this but you get the point. This is common practice in the VA medical centers. Not necessarily with MS patients just the quality of care. I'm just inquiring is there anywhere I can get help because I am in that 6 to 15% now. Please help!
  • Lost and dying   Feb 24, 2016 12:09 PM
    I am with the VA Medical Center, 6 years ago laying in a hospital bed alone and scared 5 neurologist came into my room and said you have brain damage or MS and walked out after a spinal tap with no medication 3 days later they said it was brain damage. 3 years later after getting the classic MS hug I went to an outside neurologist spending lots of money to get a diagnosis of PPMS. Not being able to afford this care any longer I took that diagnosis back to the VA Medical Center but they refuse to acknowledge it. So I'm dealing with these symptoms one by one and I'm at a complete loss! They are treating the symptoms but not the PPMS! However even the gabapentin is not controlling the MS hug anymore and oh well I have been told. I have neurogenic bladder, when I got diagnosed with that I was thrown catheters and told that's what I would have to do the rest of my life don't know why have a good day, no more follow up. I have complete muscle atrophy, when that happened I was given an electric wheelchair and told to have a good life. I could go on and on like this but you get the point. This is common practice in the VA medical centers. Not necessarily with MS patients just the quality of care. I'm just inquiring is there anywhere I can get help because I am in that 6 to 15% now. Please help!
  • kimberly-holland  Mar 6, 2016 9:42 AM
    I was married to an MSer for 19 years. I have been looking after him for almost 10 years after the divorce. He was able to work part time, 25 hours a week for 30 years. He used to go to a monthly group support until his ability to walk with a walker became a struggle.

    In late June 2014, he had a UTI which exacerbated his MS and landed in the emergency room. The well intention Neurologist sent him to acute rehab four days after admission to the emergency room. According to NMSS, It is customary to wait two weeks after the attack before starting or resuming outpatient PT, because of weakness, lack of sleep from IV steroids, or other factors.

    I wished I had run across this article right after the exacerbation because the pressure ulcer should have been prevented. They said it cost about 40,000 for each pressure ulcer. Medically it cost more than $70,000 for the 2 pressure ulcers and sepsis. The non-monetary cost is worst, he was forced to retire and stayed in a nursing home where the needed rehabilitation did not occur because he has reach "plateau." I have no idea that the insurance company would believe a therapist whose specialty does not include MS over a physician whose specialty is in MS and a past president of the Consortium of MS Centers and a PT, DPT who specializes in treating gait and balance impairments for individuals with neurological disorders such as stroke, brain injury, spinal cord injury, multiple sclerosis, post polio, and concussions.

    He is in a rehab hospital since December 15. After two months of therapy and he not surprisingly and slowly regained some of his strength because his muscle weakness is due to inactivity (the nursing home intentionally confined him in bed 23 hours a day for more than six months) the insurance company denied the extension request from the attending physician. I am writing to his former employer to appeal the decision.

    I hope all individual afflicted with MS also read the article "Treating the 'Difficult' MS Patient" by Carole Lewis and Herb Karpatkin. Part 1 November 12, 2013 and part 2, March 10, 2014. This helps explain therapy for MS patients.

    There's also a transcript of the CNN Larry King Weekend Aired April 28, 2002 which included " medical man on the front lines of the MS battle, Dr. James Simsarian, president of the Consortium of Multiple Sclerosis Centers. A very important hour ahead next on LARRY KING WEEKEND".

    Dr. Simsarian stated "The neurologist is trained in a lot of different fields and one of the reasons for developing the Consortium of Multiple Sclerosis Centers was the idea that a group of neurologist came together and said we need a multi-disciplinary group of people. We need to go with this from the various points of view including nurses, social workers, psychologists, speech therapists, rehabilitation specialists." After running interference for my former husband and learned a lot about the importance of rehabilitation, that it never ends for MS and there's no such thing as "plateau". Dr. Simsarian's statement in 2002 was critical for my former husband's recovery in 2014. Unfortunately, I heard from almost everyone including the nursing home physician and the insurance company that therapy is therapy and he has reached plateau.

    I received tremendous assistance from NMSS navigators. They are the ones who provided the information for NMSS partners in care, therapists who specialize in MS, State OMBUDSMAN, and how to fight with the nursing home (you can't because you are not there 24/7 to monitor the personnel)

    I also have a very understanding current husband (if he wasn't, we would have been divorced by now.) He was the one who did the research to locate Dr. Simsarian and took my former husband to his family physician for a referral. Although you are not required to have a referral, his office insists that you do. He saw us only four times but he wrote the rehab orders 7 or 8 times. He knew I would follow through so he was glad to write the order, sometimes within an hour of my request.

    When he came to the rehab hospital, he was bed ridden and depended on someone 24/7. He now can do contact guard transfer, snap his toes, sit up un-assisted for a few seconds. However, he now is cognitive impaired so if is difficult for carry over of functional task. Although it's too late for my former husband, he is happy that his suffering will help others and that his suffering is not in vain.

    Come to think of it, I am going to use most of this comment for the appeal letter. I will let you know how it turns out.
  • Cindy G   Mar 15, 2016 3:35 PM
    My mom was diagnosed in the early 70's with ms, I was about 13. My dad died in 1988, from there it was just my mom and I. She passed away July 4th 2015. My moms ms progressed through the years, in and out of the hospital constantly. She became bed-ridden about 17 years ago from there bed sores, sepsis, pneumonia......the doc even had to put her "plumbing" on the outside of her body to try and help with the bed sores to no avail. She was 80 when she died, it was horrible, she apparently had two strokes which was the final blow. MS is not a killing disease but the problems that can come with it can kill. But also the meds that are out today help so much more than 40 years ago, even 10 years ago. There are so many support groups for families who had to indure this brutal disease while their loved one is alive, I wish there was a support group for people who have survived their loved one, it's almost like a ptsd , I did everything in my power to keep my mom comfortable and at home where she belonged and sacrificed a lot in my own life and I still feel guilty that I didn't do enough.... Try living with that
  • Stacey-Nicole Hobbs   Mar 16, 2016 9:49 PM
    Thank you for this articl, my mum is the sufferer in my case and I just wanted to share my views and story, when I was a baby my mum had the first stages of ms, she passed out and could not walk for one week while I was a newborn, after that the attacks were spaced out, she was tall, thin, energetic, she loves life, unfortunately she wasin a very abusive relationship with my father which did not help her case and she ended up sleeping all of the time. And then came her limping, her walking was deteriorating vastly and she would have to drag her legs to walk, she used a wheelchair part of the time to help out a little bit, but then the names started coming, no one knew what she was going through and started calling her an alcoholic (she's completely t-total) and then when j was 13 I ended up in care due to gaining depression and anxiety through witnessing the only woman who had been there, the woman who brought me up deteriorate at a fast pace, I turned to alcohol, I would spend my Friday nights drinking cider in a park with friends, my mum moved 25 miles away so me and my brother would not have to look after her, her seeing me spiral uncontrollably led her to having an attack so severe that she lost all mobility on both of her legs, every time I see her I can see her deteriorate, I can see the changes and the effects it has on her, she is paralysed from the waist down, she has multiple leg spasms per day and her top half is very shakey, she can't keep her leg still, her speech is going and her eye sight is worsening and seeing her this way effects me very badly, but this article has helped and I think that as a 20 year old girl who has seen this disease worsen, I should stop sugar coating things and trying to get on with it, I should now be having to consider things that she would like to do in her final months, how she would like her funeral etc. Thank you very much for helping us all understand
  • Gammy   Mar 23, 2016 10:05 AM
    Thanks for your information. I just got out of the hospital this is the 2nd time in 2 weeks. The last stay was 5 days with Pneumonia. This has really got me worried. Today I have been home for 3 days and I think I'm feeling as bad today as I did the night I was home a lone and got so sick.
    It is a awful feeling like your alone with a Disease that is practically unknown or know one cares to know. Then again I don't what to be a burden to my family . It has made my children upset that they avoid me at times. Then the awful burden on your spouse that works so hard working on the road , worring if I'm OK or is anyone helping me while he's away. Comes home keeps things together here just to leave on Monday and start all over again. God Love Him! I know he didn't sign up for this when we got married , but thank God for sending him to me.

    One last thing I can not believe, and I told the Dr's there was NO-WAY! That you will lose people who have been in your life as long as you can remember. Losing best friends & Family that has ment everything to me , and know avoiding you like you have the PLAGUE. You don't see them talk to anyone on the phone, and WOW I'm not sure if I could ever believe (NO TEXT MESSAGES ) crazy right.
    MS is just like the song said " 1 IS A LONELY NUMBER " in my case ( 2 letters for MS + 2 letters for 1 Me =0) LONELINESS # you can ever have.

    I'm sorry for being awful today. Doesn't take much to let those 2 letters (MS) get ya down.

    Gammy

    P.S.
    What really gets my mouth wanting to jump all over someone is when they don't even ask about the unknown disease. They just say " I hope you get well soon" with a : ). I want to yell have you not been listening to anything I've said. In less the Good Lord decided to take me on home or Bless a Dr to help find a cure. This is the best you'll ever see me.....if I'm Blessed & your luck - NANA-BOO BOO!
  • Gammy   Mar 23, 2016 10:06 AM
    Thanks for your information. I just got out of the hospital this is the 2nd time in 2 weeks. The last stay was 5 days with Pneumonia. This has really got me worried. Today I have been home for 3 days and I think I'm feeling as bad today as I did the night I was home a lone and got so sick.
    It is a awful feeling like your alone with a Disease that is practically unknown or know one cares to know. Then again I don't what to be a burden to my family . It has made my children upset that they avoid me at times. Then the awful burden on your spouse that works so hard working on the road , worring if I'm OK or is anyone helping me while he's away. Comes home keeps things together here just to leave on Monday and start all over again. God Love Him! I know he didn't sign up for this when we got married , but thank God for sending him to me.

    One last thing I can not believe, and I told the Dr's there was NO-WAY! That you will lose people who have been in your life as long as you can remember. Losing best friends & Family that has ment everything to me , and know avoiding you like you have the PLAGUE. You don't see them talk to anyone on the phone, and WOW I'm not sure if I could ever believe (NO TEXT MESSAGES ) crazy right.
    MS is just like the song said " 1 IS A LONELY NUMBER " in my case ( 2 letters for MS + 2 letters for 1 Me =0) LONELINESS # you can ever have.

    I'm sorry for being awful today. Doesn't take much to let those 2 letters (MS) get ya down.

    Gammy

    P.S.
    What really gets my mouth wanting to jump all over someone is when they don't even ask about the unknown disease. They just say " I hope you get well soon" with a : ). I want to yell have you not been listening to anything I've said. In less the Good Lord decided to take me on home or Bless a Dr to help find a cure. This is the best you'll ever see me.....if I'm Blessed & your luck - NANA-BOO BOO!
  • Tyler Manners   Mar 26, 2016 9:59 PM
    I've had MS for 30 years. By the end of the first year, I was in a chair.I came home from Europe and got an MA and eventually a teaching credential. When I taught HS in San Bernardino, it frightened me, so I taught in Czech Republic for 3 years before coming back to the job I had teaching HS in Rialto for 20 years. My arms have finally almost shut down and I sound drunk when I try to talk. I m in bed full-time because of decubatis (whoops--sp) sores, and I have a lot of aspiration, but I d like to know what to expect too.
  • Tyler Manners   Mar 27, 2016 12:34 AM
    BTW, Trevis is such a cool name.
  • Sirr N. Stovall   Mar 29, 2016 11:46 PM
    My father died from MS 2 years ago. He had a huge bedsore on his bottom and eventually he became disconected from the world, forgot everything including family names but when he passed it was like he saw the light of Christ.
  • Annette Lange   Apr 3, 2016 8:59 AM
    It was very knowledgeable. Thank you.
  • Tilda Kruegel   May 1, 2016 10:46 AM
    I am the fourth person with MS in my family, an aunt and uncle who passed on years ago, and a cousin who is two and half years older than me that was dx'd at 27 years of age. I was dx'd in 4-2006 with RRMS at age 55, now at 65 nearly 66 I have been downgraded, ha, not so funny, to SPMS. I too write a blog on Google, since 6- 2008 but not only on MS. I happened on your site when trying to find more info on SPMS; been to all org. MSNA MSF MSSA sites and drs. NIH, Mayo, Cleveland Clinic etc. Used to volunteer for org. and did advocacy, and was a board member and fund raiser, quite everything in 2008, now waiting on motorized wheelchair from Medicare.
  • Katherine   May 2, 2016 4:24 PM
    I wish i found this before it was to late on the 13th january 2016 my dad died because of 'coplications" of Ms. He was only 52 he was told he had ms on the 6-6-06. It helps people to reilise what can happen.
  • JoAnn   May 17, 2016 9:37 AM
    My sister was diagnosed with Secondary Progressive MS in 2010. Looking back, she saw signs 16 years ago. She is completely handicapped. Her husband, a police officer has been by her side from the very beginning. She tells me that her husband does things for her that no husband should ever have to and it's humiliating for her. Although she is still living at home, she has already picked out her nursing home. At this very minute, he is taking her to the hospital. We all fear she has pneumonia and because she is unable to cough, she will require professional care. As a health care professional myself, I know of her ultimate prognosis. This is my baby sister. I don't know how she copes with her disease because I can't.
  • tymann   May 20, 2016 12:36 AM
    I'm told I'm in "final stage." Howlong does that go?
  • Susan   May 23, 2016 10:50 PM
    How ! many people with ! Ms die?
  • Susan   May 23, 2016 10:50 PM
    How ! many people with ! Ms die?
  • Glenda DeAngelis   Jun 4, 2016 9:27 PM
    Hi..my brother is 60 and has MS ...he just had a duodenal ulcer burst and immediate surgery this morning after ambulance took him with severe stomach pain to hospital...they patched it (luckily no colostomy, which was my fear) He has feeding tube now after coming out of operation ...I am going to see him tomorrow as his wife suggested we let him rest since he just had surgery this morning...I am terrified to see him tomorrow...what should I expect? Will he be able to talk with feeding tube (not sure if it is NG or percutaneous tube) Is it possible he will recover? I am praying but frightened
  • Jacki   Jun 19, 2016 4:28 PM
    I want to share my sister's ongoing story because perhaps it will be of help to some of you. She was diagnosed with MS when she was 38, but it's believed that she had symptoms for at least two decades prior to diagnosis. In looking back, I believe she had it even as a young teen and maybe before.

    She is almost 60 years old now and has had secondary progressive MS for about a decade, perhaps longer. I don't know how she does it, but she has survived many close calls. For her, they have mostly involve urinary tract infections, often undetected at first. I think that's because she doesn't have the sensation to recognize one brewing, but I'm not sure of that. Two years ago, she lost interest in eating, saying that food tasted " really bad." That can be due to MS; it can affect one's taste buds. Know this, and recognize it. For 8 months, she barely ate, shrank in size to less than 90 pounds and became apathetic to her condition as the months rolled on. According to her doctors, she was weeks from dying of malnutrition when she finally agreed to a temporary feeding tube. She wanted to live - she said so constantly - but she didn't realize that feeding tubes have come a long way over the past 40 years. She had the surgery and contracted severe sepsis from it, which was heartbreaking to me because I had pushed for the tube, but she survived and even thrived afterward.

    Once she got past the sepsis, she began gaining weight steadily, became more alert and back to her old self. She stopped needing the feeding tube 4 months later. It's almost a year since that surgery and she did well until now. She is back to having frequent UTI's and is not eating properly because of the illnesses. I fear she will head down the same route. At least she's now got the tube and can restart the feedings through it if necessary so she hopefully won't reach the same extreme as two years ago.

    Other issues that have sapped her strength and nearly killed her have been swallowing difficulties ( she must have someone with her when she eats and certain foods are blended) and falls. She experienced several concussions. She's been wheelchair bound for about 4 years now.

    I think, at the secondary progressive stage ( which many people never reach), that there needs to be at least one diligent, observant individual other than yourself to advocate for you. My sister has often been too sick to speak up for herself. Another sibling and I have helped her with that. So, yes, I think it's definitely possible to die from complications due to MS. But I also think that knowing the pitfalls, planning for their possibility, and reading everything you can about the condition and its treatments, can prevent a lot of what happened to my sister. We keep getting wiser, but how I wish we'd had a primer about what could go wrong and why.
  • Nancy   Jul 3, 2016 1:13 PM
    My son has last stage MS but is fighting as hard as he an to continue to live, thanks for the infornpmation I did expect what will happen to,him but in the mean time I am very proud of his fight to survie
  • irene   Jul 3, 2016 9:39 PM
    Hey Lisa Hill...please do not listen to the negative voice in you telling you you are worthless...sorry sweetie you are not worthless but VERY sick...those thougths are what drive some to suicide...do not.listen to them...you were a hard working.person. who got a real bad deal...fight back by not allowing this kind of thinking...be courageous...pray...God loves you just the way you are...much love from BC Canada
  • irene   Jul 3, 2016 9:39 PM
    Hey Lisa Hill...please do not listen to the negative voice in you telling you you are worthless...sorry sweetie you are not worthless but VERY sick...those thougths are what drive some to suicide...do not.listen to them...you were a hard working.person. who got a real bad deal...fight back by not allowing this kind of thinking...be courageous...pray...God loves you just the way you are...much love from BC Canada
  • Christopher Doyle   Jul 5, 2016 9:19 AM
    My wife was first diagnosed with ms in 1996 initially DIDENT really effect her life to begin with,was given an drip to help with the symptoms and then life went on as normal,@"BUT",slowly but surly it pulled her down she became less and less helped by the medication as her body got use to it,then slowly her strength and balance started to weaken,by 2000 she was wheelchair bound and very limited mobility,house was converted in many ways to assist but it became clear it was not enough and she was TAKAN into full time care,the misinformation about the costs was very scary !!!,for example advised the whole estate was liable when it's the individual that is liable to. help cover costs,.
    That aside now she is extremely unwell,bed ridden 23-24 hours a day,stomach removed (peg fed),cannot talk and limited vision,basically no real quility of life,she has infection after infection and has spent many times in hospital,kidney infections,stones,throat infections,UTI,and on and on,I often wonder where she finds the will to live,have been told many many times she won't make it,then she recovers,it's very cruel to the family but respect her will to live,defiantly in the final stages of MS but seems to hang on to what life she has,.
    I share this for Christine,(Doyle),
    I think this is the worst stages you could find yourself in and many people can live with MS in milder stages,.
    With respect

    MR CHRISTOPHER JAMES DOYLE
  • quinton   Jul 14, 2016 3:56 PM
    I sacrificed my Life to saving my Wife with MS and l failed ,we fought till the death together. My wife was on a peg feed and she was well till we were let down by the system, l believe it added to her death .England nhs
  • Sarah   Jul 14, 2016 11:44 PM
    I have MS knowingly 20 years. My life is *****, this disease has affected my life as a whole. I'm now 10 years into my second bad marriage and my husband is abusive. My husband makes my coping with this disease impossible. His campaign to break me down and his daily verbal abuse is killing me! I need help, he's tried to have me committed. My husband had me arrested from the business we own, which I was vindicated. My husband has now cut me off financially and I don't know what to do. I have a disability SSI claim filed so I cannot earn money without putting my case at risk. Please, I beg you to advise me.
  • Doreen   Jul 16, 2016 1:48 PM
    My younger sister has MS she has been in a wheel chair for years, her huge problem at the moment is her feet get so hot that she gets huge blisters from the inside out, I am wondering if anyone else have experienced this horribly painful symptom?? She always has to keep a fan on her feet, and has a water bottle that she has to keep spraying them. Of course her feet are always swollen, when they are purple is when they are most comfortable. My heart breaks for all of the MS people, there are too many people that think they are just numb and shouldn't have pain! OMG if they only knew! when I watch my poor sister with the pain she has is so unbearably hard to see. She is such a Gem, she rarely complains, and I have never heard her say "why me!" It would be so amazing if someone could even come up with something that could stop the relapses...
  • Delilah   Jul 19, 2016 10:55 PM
    Hi there, I am the daughter of my late mother, diagnosed with MS. She pasted in 2014, I at the time 14 myself. I was thinking about the disease today that caused her life to go down hill, and started reading articles discussing MS. There were several times where it was stated that it was very rare to have death caused by MS, so I'm glad to have finally seen something addressing the possiblites. I watched my mom go from not being able to drink coffee (how I wish that would've been it) to not driving, later not being able to walk, then forever in bed, to not feeding herself or sitting up, lastly not being able to speak. It was hell. Pure hell. We tried to keep her home and care for her, but we couldn't keep up. She spent a whole year in the hospital, & was later moved to a nursing home. She was only 54 and her youngest childern, my brother and I, only 13. I can't imagine what she went through, and I lived through this with her. One of my brothers said it best, her body was her prison. I realize now that she had an extreme case and I'm so glad that this isn't the norm of MS. Being said that, I wanted to write this because there's a chance someone will read this that can relate, know that MS CAN be that bad - not that most cases are, but it's there. Towards the end she didn't eat, only drank Ensures and was nothing more than skin & bones. In the nursing home she developed a condition with her throat and couldn't breathe, on top of this she had a virus in her system that keep her from getting better. She was sent to the hospital one Monday, because she could no longer breathe on her own. With the virus, her malnutrition & her weak state in general, we were told she wouldn't make it through the night. She was unconsciousness from a emergency surgery they had to preform on her and the hostipal decided to keep her unconsciousness for her comfort. This was the state she was in for the last 2 days of her life & how I last saw her. I don't know the last time I saw her conscious or the last words I spoke to her then, it eats away at me. She made it through the first "she's not going to make it" night, but the next day we were told the same thing. She passed around 1:10 am Wednesday morning, a few minutes after we left. This is my story about Multiple Sclerosis.
    I was urged to write this and I believe it has helped me with her passing, more than a year after the date.
  • Lakeisha walker   Jul 23, 2016 8:07 AM
    Researching on a family member that's been in the hospital for 3 weeks in bad shape with this she's gone blind in both eyes paralyzed no memories
  • Eve   Jul 25, 2016 5:35 PM
    Thank you for providing this information. Appreciate it greatly.
  • Claire cedeno   Jul 30, 2016 5:52 PM
    Thank you for taking the time. I always wondered about this. My neurologist says we die with ms it doesn't kill us just debilitating us always!
  • Mcroken   Jul 31, 2016 9:01 AM
    I am believed to have MS by my doctors but am still getting tests done to diagnose. I believe to already have severe MS. Thank you so much for this insight. It always help to know what monsters you are dealing with to be prepared with your weapon of choice! Thank you for being true!
  • Linda T   Aug 1, 2016 4:25 AM
    Thank you for your article. When I ask a medical professional about my sister, they say something like "everyone's journey with MS is different". I really don't want that answer, I want to know what to expect. Yesterday I went to see my sister. She is in a nursing home, I visit 3 to 4 times a week. When I got there, she was unresponsive, I couldn't wake her up. I had seen her the day before and she was fine. She also seemed to be burning up with fever. They made no attempt to call me, or send her to the hospital. I told them to call the ambulance. She is in ICU right now with sepsis from a very bad UTI. They can't seem to get her blood pressure back up. The hospital did manage to get her to a point where she would respond and talk. I don't know if she will come out of this. I guess because I could never get an answer it has come as a shock to me. Thank you.
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  • Lenka Ramsay   Aug 21, 2016 10:49 PM
    Thank You for sharing this. I have a 40 year old son, 11 years with this terrible desease, now he is diagnosed - last stage of ms. Only thing working well is his mind.Through out this journey, the medical people were playing GOD, and if you don't educate yourself and fight, you will have death sentence attached to your name like he had in 2004.
  • Karen   Aug 23, 2016 9:52 AM
    My son had ms and passed away at 44 in 2014 his ms caused paralysis in his last 3 years of life ....I am so angry that he had to suffer this way....
    I pray there will be a cure soon!




    M
    S







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  • G-MAN  Aug 24, 2016 10:05 PM
    Very well written . We should all concentrate on living life to the fullest as hard as it may be. We could all use someone to talk to. You've given me an inspiration to try a little harder,Thank you.
  • Brittany   Aug 24, 2016 10:44 PM
    I really love this post, as it brings awareness to the scary aspects of such a disease. My father was diagnosed with MS in around the late 1990's. His condition only worsened from there (as he reacted horribly to any medication doctors gave him). He began loosing control of his legs, and was admitted in a nursing home at the age of 46 because my mother, having just had a child a few years before the admission, was not able to take care of him full time. He began to have issues speaking and soon lost control of most major arm functions as well. He ended up passing away in 2006 at the age of 50. I am so happy for the people who are able to live full happy lives with MS, but it is definitely a disease which needs more serious attention not only in the science community but in society as a whole.
  • TruthSeeker   Aug 30, 2016 7:41 PM
    My ms has worsened again, and it scares me. I do not have anyone I can depend on, so death is better than helplessness if these symptoms do not reside. I am experiencing both motor problems, cognitive, and also sensory. I am numb all over, pretty much.I feel depressed because I am very poor, and unable to work, or unemployable. I desperately need money, and do not know how to get it legally or illegally. Everything seems totally hopeless, and I feel totally helpless. My handwriting becomes very bad, but fortunately, I have a tablet, and can type. I never thought I would get involved with social media as I know how dangerous it is. But my life is very dangerous, and I feel that I am rapidly losing it.....
  • TruthSeeker   Aug 30, 2016 7:41 PM
    My ms has worsened again, and it scares me. I do not have anyone I can depend on, so death is better than helplessness if these symptoms do not reside. I am experiencing both motor problems, cognitive, and also sensory. I am numb all over, pretty much.I feel depressed because I am very poor, and unable to work, or unemployable. I desperately need money, and do not know how to get it legally or illegally. Everything seems totally hopeless, and I feel totally helpless. My handwriting becomes very bad, but fortunately, I have a tablet, and can type. I never thought I would get involved with social media as I know how dangerous it is. But my life is very dangerous, and I feel that I am rapidly losing it.....
  • TruthSeeker   Aug 30, 2016 7:42 PM
    My ms has worsened again, and it scares me. I do not have anyone I can depend on, so death is better than helplessness if these symptoms do not reside. I am experiencing both motor problems, cognitive, and also sensory. I am numb all over, pretty much.I feel depressed because I am very poor, and unable to work, or unemployable. I desperately need money, and do not know how to get it legally or illegally. Everything seems totally hopeless, and I feel totally helpless. My handwriting becomes very bad, but fortunately, I have a tablet, and can type. I never thought I would get involved with social media as I know how dangerous it is. But my life is very dangerous, and I feel that I am rapidly losing it.....
  • TruthSeeker   Aug 30, 2016 7:42 PM
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  • Christopher Robbins   Sep 4, 2016 11:28 PM
    I have very advanced MS. Aside from crippling attacks and Fatique, horrible constant pain, weakness and depression. The neurologist who diagnosed me retired and left nothing in his notes about my diagnosis or prognosis (according to which I should already be dead). I can't find another decent doctor and none of them seem to even care. I am grossly under medicated for pain and have spent many years laying in a hospital bed in my home 24/7 due to agonizing pain never leaving except to go to these incompetent, uncaring doctors. The only thing that has kept me alive is my faith which is rapidly going down the tubes. Is there anything anyone can say to give me REAL hope?
  • Angie Webb   Sep 9, 2016 2:31 PM
    I am at this stage with my MS.

    Alone and homeless.

    Terrified
  • Deborah Burch   Sep 11, 2016 12:43 AM
    I am reaching out because my cousin has Multiple Scrosis, he is in a facility in Town and Country Missouri. He cannot walk at all for the last year, his motorized wheelchair has been out of order,more than it has been in order..We have asked for the facility to have it repaired,only to get a response that they have cut back on Medicare and there's only one man who comes once a month to fix them.My cousin just came back to facility after a two week stay in the hospital in which they had let a absese develope to the point when he got to ER they had to do emergency surgery, to prevent poisoning his system. Now with the missing of all teeth pulled , they are saying medicare isn't paying for his teeth., my cousin has now become so depressed because he is to week to use a manual wheel chair,he is lying in bed.All day and from reading this article will no doubt develope the bed sores.MY Cousin was in his middle 30s when MS came on her has a Masters Degree and was on his way to becoming a criminal defense attorney.. I ask is our system failing our disabled American to the point they loose interest in Living...This is American. Can you please point me in the right direction to get him some help..I love my cousin we grew up together. He wasn't always like this.He didn't cause his MS.. Thank you for listening Sincerely Deborah Burch
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  • JASON WILLIAMS   Sep 26, 2016 7:00 AM
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  • Kimberly   Oct 3, 2016 2:39 PM
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  • Leann M.   Oct 7, 2016 10:42 PM
    I. was diagnosed with MS this year and I am 60 years old. I have severe balace problems and walk with a walker. Today I started jerking with all areas of mybody. I have burning sensation of my skin and severe muscle pain throughout my body. I start in 2 dqys on a clinical trial for a new drug to help MS pts stop relapsimg. I pray it woks because my body jerking all the time is very painful. I will keep u posted on how the trial is going.
  • Leann M.   Oct 7, 2016 10:42 PM
    I. was diagnosed with MS this year and I am 60 years old. I have severe balace problems and walk with a walker. Today I started jerking with all areas of mybody. I have burning sensation of my skin and severe muscle pain throughout my body. I start in 2 dqys on a clinical trial for a new drug to help MS pts stop relapsimg. I pray it woks because my body jerking all the time is very painful. I will keep u posted on how the trial is going.
  • Heta Haria   Oct 20, 2016 10:46 AM
    M a 23 yr old girl from India.. M affected by M.S since I was 17... I know there's no future scope in this disease I just have one query..
    Finally when will b the death arrival to me?
  • Lia smith   Oct 23, 2016 9:10 AM
    My friend just found out she have ms. But she's not dealing with it to well.so she started using drugs I don't know what to do. She don't want to talk to me about getting help. What can I do?
  • donna ladin   Oct 26, 2016 8:51 AM
    I have a strange habit of glancing at the obits in my paper. I have always been curious about when they read of the cause of death " struggled with MS" or any cause from MS.
    I have relapsing/remitting for 25 yrs.
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  • MikeZ   Oct 28, 2016 3:14 PM
    My brother Marc was diagnosed in December 1995, but knew something was not right for 10 years prior. He passed in November 2013 at age 49. I watched all he was and all he worked so hard for painfully stripped away from him. I picked him up off the ground more times than I care to think about. MS ravaged him like a wildfire. Not a day goes by that I don't think of him and how he suffered. His suffering would not end until 41 days in hospice would pass.
  • Dan gage   Oct 30, 2016 9:04 PM
    I was diagnosed in june 2016 and then told that in 2014 i had some scan and demylenating plagues, but the drs never told me. SO i dont know how long ive had it. MY memory is bad, and i get confused and don't understand well. MY vision is blurry, i get hand and leg tremors and have swallowing issues. MY left leg is numb and hurts 24 hours a day and no dr will help me with the pain. Its getting so bad the pain. I hope i die soon. I cany take the pain. IM in wheelchair most of day . I have no joy in life and i cant do anything. I live alone cause my wife died of brain cancer this march. THis isnt living its existing and dealing with this horrible pain. I dont want to live no more.
  • Mavis   Nov 1, 2016 5:51 PM
    I just lost a dear friend to this ..are their any new drugs ...he was in Canada.
  • Cammy VanGee   Nov 1, 2016 10:30 PM
    I have three siblings, a first and second cousin with MS. Each of my siblings have differing degrees of this disease. One sister who had the progressive type died in her 40's. My older sister is 70 and has difficulty with mobility and memory. The third sister is usually stable as long as she keeps herself rested and healthy. I am now taking care of my older sisters affairs and am trying to help her be as independent as possible. Myself and my other two siblings all have autoimmune problems. I look forward to following your blog.
  • Valorie Glenn   Nov 7, 2016 8:04 AM
    I'm feeling like I'm at the very end of my life and feeling really sick and somewhat affraid because my daughter is having a hard time dealing with my MS diagnosis. I thank you for the information you have supplied.
  • Rona   Nov 7, 2016 6:04 PM
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  • Robin Murphy   Nov 20, 2016 4:24 PM
    Just found out yesterday,but now I know I've had it for ,25yrs.having lung infections that antibiotics aren't working on. have 1/4 of lungs aren't working 3/4 working.but have problems getting food Into lungs.scar tissue in that 1/4.
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  • Jon   Nov 29, 2016 2:07 AM
    How many times have we heard we all have the same disease with different symptoms now at the primary progressive advancing to progressive that alters my abilities very frequently. so, should I force myself to move more? walking is very difficult for me in the house I can get to places and because I was a general contractor with many tools, I can use my electric scooter down in the shop and get from here to there but usually finish everything start to finish actually on my knees.
    I'm 60 now, and have had symptoms for 25 yrs. or more....but being self employed, my father always spurned me on by saying self-employed people don't have bad backs.
    Fortunate I suppose, because my SSDI is in the upper post tier.
    My wife is an RN and literally like me to do NOTHING, but the drive lnspired by guilt and carnivorous capitalism, makes my lazy days really cause an unhappiness, and a form of shame, that just doesn't want me to accept my condition.
    Am I suffering a form dillusion, or should I keep using this gimpy compulsion, and keep trying.
    Neither of my teen boys want to help, because in most cases it involves not only more than they want to do but also more than they want me to do , respecting their mothers concern, I'm certain. Leaveing to my demise will likely be from a fall, either me falling, or my project falling on me.
    Please advise.
    Thank-You,
    Jon Kleven
    (206) 579-3350
  • J   Dec 9, 2016 5:36 PM
    I suspected my fate of MS after my sister voluntarily died of MS with md help in 2003. In 2003, I was diagnosed with MS and thought I truly understood her path.

    My MS has been diagnosed and misdiagnosed numerous times with my sister clearly out of the process and, now, I pause at even mentioning her history, so sorry Kathy.

    I now live solely with the support and undying care of my longtime lover and spouse. This was and is not acceptable! I'm over 60 now, MS hit me in my 30's. Sad for both.

    Problem. . . no doctor wants to challenge the opinion of an arrogant MS specialist Dr. who could not remember my name and truly thought I was someone else! She stopped all treatment and . . . .

    Me, too many lesions to count, I crash and I burnout at every single milestone I encounter. I just need it to be treated or to end the misdiagnose and get on.

    I feel desperately sorry for my spouse of almost 40 years--truly dedicated. I cannot realize my own or our dreams or ours and her's.

    I live in SF, been through the frik'in works. What to do, what to do?
  • Melissa Ventre   Dec 9, 2016 8:48 PM
    My daughter April was diagnosed with ms at the age of 20 still a baby and battled through with relapses and the was on tysabri which she seemed to be getting better and healthy and we had no idea she was battling with her ms and and 2 yrs later 21st nov took her own life and we as parents are finding it so hard to cope with the loss of our beautiful Angel April i wish we could of seen signs or knew more of the deep side effects ms has on the mental state thankyou Melissa
  • Mike Alsdorf   Dec 11, 2016 6:15 AM
    Thank you very much for this site.

    Says that this url is not functioning:

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    www.nationalmssociety.org, perhaps membership and sign-in are needed first!