Some families share there lives and know just about everything that each other does, mine is not that way. We are all very accustomed to bad news or misfortune, so if something is going wrong in your life you keep it to yourself because you know that no one else has any extra energy to care. Also, we are all sort of in and unintentional battle of "Who has the thickest skin". So the fact that I haven't felt well is not something I have shared with my loved ones. Unless it is hospital worthy, we just keep it to ourselves.
I'm having trouble typing right now because my left arm feels like it weighs 100 pounds and tying to hold my hand on the keys induces a downward pulling sensation in my left hand. This is just one of the many odd things that have become normal in my day to day. In fact, there is a long list of things that have became normal over the last 2 years, most of which I've just learned to ignore or work around. It has only been in the last two weeks that I've had such a hard time with my left arm that I've actually looked to family and doctors for help.
I'm not the picture of health by any means, mainly because I drink too much caffeine and smoke a half a pack a day. But I am at my ideal weight and until recently was know to be something of a human ant (being able to lift more than my body weight without much effort). I hardly drink and don't do drugs. I am a vegetarian and I don't eat excess salt or sugar. I have generally been a ball of too much energy for most of my life. I sit down very little and am more likely to be found doing handsprings or headstands, than sitting in a lawn chair. But something has changed. I finally made a full list of things that have started in the last 2 years that I, in hindsight, probably shouldn't have ignored for so long. I really just thought this is what it felt like to get "Old". Hence the downside of not talking with many others my age, because now they tell me I shouldn't feel at all "old" at 31. I'm quite private about things so its not easy for me to actually admit some of these things to others, so be gentle.
Heaviness in left shoulder
Numbness left arm and hand
Left ring finger twitches nonstop
Extreme muscle weakness all over
Bouts of all over itching, lasting 45 minutes to 2 hours
Forgetfulness (doc appointments, work assignments, why i went to the store)
Increasingly frequent episodes of saying the wrong word.
Rolling headaches on right side of my head
Inability to carry my 30lb son for more than a few minutes. He feels like he weighs more than me.
Trouble waking up in the morning, actually being late. Not common for me.
Trouble concentrating, more than my lifelong ADHD has ever done.
Decreased sexual desire
Feeling like parts of my body are moving when they aren't
Twitching in left eye, comes and goes fast
Flashing lights sensation when I close my eyes
Eyes are extremely photosensitive
Charlie horses in my legs daily
Limbs regularly get the feeling that they have "fell asleep" several times a day, moves from one part to another.
Dead feeling in left calf and left foot for 2 years
Waking up at night and arms and legs feel dead have to sit up and move them around because every sleeping position feels uncomfortable
Weight gain because I don't have the energy to get up and move around.
Hot flashes even though I'm always cold.
Episodes of chest pain/tightening and feeling like I cant catch my breath, lasts about 10 minutes
Getting too hot when i'm outside even though I have never felt even Louisiana heat uncomfortable
Feeling old and worn out pretty much all the time.
I've went to several docs now and when it all comes together they all say it sounds about the same, but even if I just want these things to go away or be explained, I really don't want to jump on a diagnosis. One big issue is even trying to confirm a diagnosis. I'm also trying to will it all away and telling myself I cam internalizing all of it and its all in my head. Because I don't have a confirmed diagnosis, I'm not going to say its Muscular Sclerosis. I'd like to hear from other women who can say they had some or a lot of these issues and what they eventually concluded with their doc's. Thanks for any help.
I do have most of the same issues. I really do understand where you are coming from.
My family have all given up on me They won't even talk to me or have anything to do with me. I am so happy that we have found this site because we need all the support we can get.
Ihave found that the right diet for me really helps a lot.
I actually have a lot of these symptoms was dx with MS in January it actually was a relief to me to have an answer to all my issues. I had gone through 5 surgeries in a 2yr period of time and was wondering why I was not recovery properly. I had a partial left knee replacement then 8 months later a total right knee replacement it took me 6 months to rehab both times just to get back to work and not be able to handle the physical demands of the jobs the fatigue was just to great, along with the pain of weakened muscles and nerves from them being cut from surgery it was awful.
Hi. I had most of these symptoms plus a few more. I was diagnosed with RRMS a month ago just before my 40th birthday. Your post was a little unclear, when you say the numerous Dr's are saying it "sounds about the same", are they referring to Multiple Sclerosis? I myself was relieved to finally have a diagnosis. At least there are medications that can hopefully slow the disease down.
I turned 65 last December. I was in the process of diagnosis at the time and had MS confirmed this week (5/6/13) after spinal tap results. Thinking back, I had some minor symptoms for 10 years, but would have never thought MS.
In 1992, I was dx with optic neuritis, but was told i was one of the lucky ones with only optic neuritis, not MS by a neurologist. Symptoms typical of MS had occurred from mid-20s onward. In Dec. 1999, at age 52 I was told by ophthomologist that I had MS and what med was I using. Hah, nada! He sent me to different neurologist who confirmed MS after MRI, spots were there all along.
I was relieved to have a dx, after beginning to think symptoms were all made up in my head. Noooo- I actually had something wrong in my head! Avonex has been my weekly companion since then and I'm doing relatively well at 65.
I was 34 when diagnosed although I had symptoms for a couple of years before that. I had no other new symptoms after my diagnosis and didn't take any of the disease modifying meds for the next five years. I moved and started a new job before having my next flare up. Thankfully I found an excellent Neurologist who helped me understand the importance of being on a drug modifying regime. I have since had a number of flare ups andd gone from Avonex to Rebif and recently to Gylenia. I was able to work for 11 years after bing diagnosed and am now on full time disability. I am thankful I was able to continue working as long as I did and also thankful I have found doctors who are able to guide me through this complicated disease.
I was dx 6/2008 at the age of 47. However now that I know what MS is, I can trace my symptoms back to when I was 39! The doctors always treated the symptoms, like fitting me for hearing aids instead of looking for what caused the lose! I finally asked to be referred to an ENT doc to determine if my inner ear was causing my vertigo...he ordered the MRI and then all he said was "you need to see a neurologist"... I didn't even know what "demilenation" was and it took many more tests before I knew for sure it was MS.
I too was relieved
I was 39 when I began having symptoms in 2000, but I was 47 before I was officially dx in 2008...Doctors always treated the symptoms without looking for the cause. I've been on COPAXONE since 2008...talking with my Neuro about trying something else...
**anyone out there who has tried Low Dose Naltrexone (LDN)?
I was diagnosed 5 years ago on Valentines Day- of all days- I was 38 at the time- They determined by the leasions and history- that it began- I contracted it- it developed- whatever term you want to use- back in 1988 when I was pregnant with my first son. My husband and I at the time just thought I pulled a muscle in ballet again- LOL I can actually pin point every leasion to what I thought was a pulled muscle or over exertion in sports. My father had ALS- so watching the progression- I should have ? my syptoms more- but I was, and still am very active- so didn't really think anything of it- My diagnosis came after having fallen and shaqttering my right hand. during the 9 month fight w/ Workers Comp- they had me do a cervical MRI to see if I had broken anything further up- They found the intial leasions on the C Spine then and sent me for brain MRI and spinal tap- I started on copaxone and have it been on it ever since- that relapse is the worst I have had, and none that I have really been aware of since- although I am developing more leasions each year- so the progression is happening-
Hi OffBalance. I have been diagnosed since 2002 when I was 16. I am 25 now and still living a somewhat normal life, and the MS hasent really started affecting me badly until lately. I have more flare-ups and symptoms than I ever had before. Now the diese is starting to scare me more and more everyday. I have done a lot of reading and studying about the diese now having it for almost 10 years. These days I cant rely on anyone but myself for my diese progression and where it takes me. This makes me really scared somethimes. But a great attitude towards MS is all we need to stay stong and have a great future.
I was 27 when I was diagnosed with MS. I’m 100% positive that my symptoms started around the time I turned 18. I was on Copaxone, but switched to Tysabri when symptoms continued to worsen. My grandmother just passed due to parkinson-plus syndrome, and my mother has a worsening problem with rheumatoid arthritis. My father’s side well, is just as bad if not worse. My family doesn’t have the best genetics, but what we lack in health we make up for in heart and love for each other. As a family we will get through this we always do. I’m glad to share my story and look forward to reading a connecting with more people.
I've had symptoms since the age of 14 but was not diagnosed until I was 18! I am now 26 and I have been living as close to normal as possible. I have been on Rebif, Copaxone, and am now on Tysabri. I have also switched to a Mediterranean diet (basically vegetarian but I eat fish occaionally) but I tried a plant based/vegan diet for about 7months. I feel great now but I switched about a year ago when I woke up and couldn't walk! I walk fine now but it was the worst flare up I've ever had and definitely scared me more than I had been before about this awful disease.
tentatively diagnosed at 25, after second optic neuritis. That as 1991. But told to wait to try test for official diagnosis when the symptoms progressed, as preexisting conditions can effect what insurance might support. 25 years of random symptoms, it progressed to the level where i couldn't just 'live with it". MRI was last week. Confirmed.. I knew it all along, but it's nice to have the confirmation
Hi OffBalance, I was/am 47 and dx'd - also with psoriasis/excema and my mom has leukopenia and other auto immune issues as well. interesting to read the ages - thanks for posting
Hi offbalance! I was 19 years old when I was diagnosed with optic neuritis which immediately made them start looking into possible MS. I was officially clinically diagnosed in August of 2009 at the age of 25. I was put on Avonex and did well with that for a while, I recently have been experiencing more and more symptoms of MS and I am having to really learn my limits... Which is very hard for me. I am learning slowly but surely.
I was diagnosed at age 53 but, with hindsight I know that I had symptoms like blurry vision and vasovagal fainting as far back as 12 years old.
I was diagnonsed in July of 2008 at 45. I had my first symptoms about a year before, numb hands. At that time they thought I had Carpal tunnel. I was tested and told that Carpal tunnel was negative. No one else in my family has had MS, but my mother had Lupus.
Hey Offbalance, I turned 65 today and I have be dxd for about 13 years now. It only took them 5 years to diagnose me so I feel pretty lucky.
Being older you never know if it is just old age symptoms or something not so serious like MS. Exercise, diet, and the right attitude is the best help for MS other than the meds. I have been on Avonex for 12 years and am going to be joining the Tysabri drip club in June. Tysabri is another med.
I am suggesting two groups to everyone: Laughing With MS and NEVER GIVE UP! I hope we can get a ton of people there....not just one person that weighs a ton.
Anyway there are lots of groups to join and you will get support from every one of them.. You will never find a better group of people than at MS Connections. God Luck
I was diagnosed 9 yrs ago when was 33. I had a feeling it was MS. My mom has MS which made me familar with it. So far, probably because of the meds available now and everyone reacting differently to the disease I am doing well. My first nuero was horrible. I only saw himonce and then switched. The ride into NYC isn't fun, but the nuero and pratice is great!