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  • adamlev2000

    Cindy,

    Speaking for myself, I think you will find that each MS patient is almost a unique case, since the symptoms can and do differ so dramatically from one person to another, and over time. Because the disease results in lesions in the brain and central nervous system, the symptoms depend on how lucky (gotta have a sense of humor) you are at any given time based on where your lesions are active.

    1. Aside from the relapses, how has MS affected your daily routine? Are there activities that you cannot do anymore because of MS?  [THANKFULLY NOT YET IN ANY DRAMATIC WAY FOR ME]
    2. What kinds of nutritions do you have to look out for? Has MS affected your diet? [I AM TRYING TO EAT HEALTHY AND LOSE WEIGHT. CONSTIPATION IS COMMON SO I NOW TRY TO EAT ALOT OF FIBER AND VEGGIES; I ALSO SUPPLEMENT WITH VITAMINE D3]
    3. How long do the relapses usually last for? If on medication/therapy, will relapses never occur? [DONT KNOW YET, SINCE I WAS ONLY DIAGNOSED THIS SUMMER. SYMPTOMS HAVE PARTIALLY REMITTED, BUT DONT KNOW FOR HOW LONG]
    4. How has your physical and emotional state changed since your diagnosis? [NOT EASY ADJUSTMENT; BEST TO KEEP POSITIVE ATTITUDE]
    5. Have your life goals changed throughout these past few years? Has MS affected these goals and if so, in what way? [SAME GOALS (thankfully there are several new drugs today that were unimaginable 30 years ago). I TRY NOT TO SWEAT THE SMALL STUFF AND AVOID STESSING MYSELF OUT. In a way, MS has given me a healthy sense of perspective and forced me to rethink what is truly important. I no longer take things for granted and appreciate people and life more now.]
     
    Good luck with your project.
     
     
     
  • maria1

    Cindy, Unlike Adam i have been living with ms for more than 50 years. The mental and physical changes are dramatic and make daily life different every day. I make no plans, see how I feel when I wake, and what I think I am able to do. I am dependent on others for driving and shopping. I seldom socialize and never travel. The biggest goal change is happiness, I have learned that happiness is feeling good about myself and focus upon what ever it takes to achieve that goal. Although I am limited in my abilities anything I accomplish is worth being grateful for and that I celebrate. For me, the drugs have only slowed the proccess of the physical and mental lossess but have replaced them with finincial expenses beyond my wildest dreams. But as long as the pains expecially from muscle spasms are tolerable I am ok. If you want to know what it is like to live with a chronic illness that surprises you every day try one day walking around blindfolded, another day put your arms behind your back, another day do not move your legs. What you might find is that you are more than all the things you are able to do, how you adapt and cope is more of who you are.

  • Lynx
    cindyc3, Thank you for reaching out and making a great effort to understand a condition that affects so many! Here is my input on MS. I have to slow down and be accepting of my limitations, whatever the day may bring. Some days I am very tired. Some days my vision is very poor and I avoid driving. I have to be careful when walking on stairs so that I do not fall--I'm very wobbly. I am very forgetful and cannot think of words that I try to recall. I make mistakes while speaking, and when I swallow food, it sometimes go down my airway and I choke. Hot baths are out, sadly. Heat is not good for MS. Emotionally, things have improved. I did not know that lesions were causing depression. Once treated, I felt better. Sadly, I have been reading less due to MS. I forget storylines and initially would reread portions in an attempt to remember. This did not always work. My doctor explains treatment options and trusted resources. My physical state has gotten worse but things that are treatable, are being treated-such as muscle spasms. This improves how I feel physically even though problems don't disappear. My life goals have changed. I am thankful for today and try to help others whenever I can. Some lifetime goals I am meeting--this is great. Others are being left in the dust. My one big goal is to see my children to adulthood--I feel a great sense of responsibility and want to give them a great start in life. The trip to Italy does not seem as important as it once did! Lynx
  • love4leo

    cindyc3 wrote:

    Hi love4leo,

     

    I am a junior in high school and am currently working on a project in my Anatomy class. Each student gets "diagnosed" with a chronic condition, and so for the next three months, I will be doing research on what it is like to be living with Multiple Sclerosis and how to deal with the physical and emotional aspects of it. First of all, I really hope you are doing well despite everything that has happened.

     

    I was wondering if I could ask you some questions about MS and how things have changed since your diagnosis. My questions are below and I am looking forward to hearing from you! Sorry in advance if some of my questions are too personal; it is okay if you do not feel comfortable sharing.

     

    1. Aside from the relapses, how has MS affected your daily routine? Are there activities that you cannot do anymore because of MS?

    2. What kinds of nutritions do you have to look out for? Has MS affected your diet?

    3. How long do the relapses usually last for? If on medication/therapy, will relapses never occur?

    4. How has your physical and emotional state changed since your diagnosis?

    5. Have your life goals changed throughout these past few years? Has MS affected these goals and if so, in what way?

    Thank you so much for your time,

    Cindy

     

    Trust me, these aren't too personal. I just had to sit in the office of one of my instructors and tell her why I can't sit still and have trouble concentrating in class. It's not really something that you want to HAVE to talk about face to face. It's kind of embarrasing when I'm doing a skill and my instructor asks me a question and I know the words I want to use, but I just can't force them to come out of my mouth. Happened to me last Wednesday. I was horrified but she was really nice about it and asked me questions and prompted me for reply. 

    1. Daily routine: I had to readjust things like shower time because of fatigue. If I take a shower in the morning then I feel like I need a nap by the time I'm out. Somehow that doesn't help at night and I pretty much only sleep about 3-4 hours a night. I can pretty much still do everything that I could physically do before, but it's harder for me. A lot of people don't get it, because they can't see it.

    2. I didn't eat a very strict diet before I was diagnosed, now I eat a lot healther and try to watch my diet. I haven't really had any dietary changes other than I noticed that wheat products upset my digestive tract so I just don't eat them.

    3. My first relapse was about a year ago. It included numbness and tingling in my face that progressed to feeling like it was literally on fire. Light a match and stick it to your face, on fire. But only on the right side. Since it didn't interfere with my mobility I still went to school and pretended (poorly) that everything was okay. Right now I take Betaseron (interferon beta1-b) and have not had any relapses on this medication. I dont' really like the medication-it's an injection and causes bruising, redness, soreness, and some discomfort at the site. My neurologist and I have looked at the different medications and he feels that this one is the best for me, despite the side effects.

    4. Physical state: pretty much the same other than I hurt almost all the time. My emotional state however; poor. I don't know if it's the MS, the medication side effects, or what else, but depression has hit me pretty hard. I take an antidepressant for it, but I haven't noticed that it has helped me yet. I'm hoping to see some changes soon. The depression makes the MS feel worse and the MS makes the depression feel worse. Not a good synergistic effect.

    5. Before I was diagnosed, I was applying to nursing school. I got the diagnosis, then I got my acceptance letter a few months later. I'm in my second semester. I thought I wanted to be this awesome nurse with a CNM(certified nurse midwife). Now, I'm just trying to finish school. I have a three year old and a husband and I want to contribute to my family. My major goal is to stay as mobile as possible for as long as possible so that I can actually participate in my family. I would like to have more children, but I don't know if I will be able to or not. 
     

     

    I hope this helped and you can ask me more questions if you need to.

  • roblo
    Hello 
    See how one MS patient is thriving and enjoying a better quality of life with the help of this community
    If anyone in the group can you could help us by sharing this on your web page and anyone else that you think would find interest in this? Thank you in advance.
     
    http://www.castingnewlives.com/2014/09/stillpoint-life-inside-zen-community-penny-peyser
     
  • sislb1976
    I'm new to the MS as well and I have new or worse symptoms almost everyday and I make sure I let my doctor know right away. Don't ever question it because it's better to be on the safe side. I'm still waiting on my Copax and right now I'm just on my vitamins, sleep med and pain med. I pray the Copax does what it's suppose to so of course in this moment of waiting and some other kind of symptom comes along, I make sure the doc knows. I came on here to hopefully find a good support system and people to talk to that understand what I am going through and I hope you do the same :)
  • huebie
    No neurologist ever gave me practical coping tips, such as daily Phillips Milk of Magnesia and bran and prunes! And lots of coffee and a daily nap. I personally never benefited from any of the A-N-C drugs, although without them I may have gotten worse. You are doing what you can, rest assured.
  • helpmetolive

    hello sweetie i sorry that this happen to you every thing your feeling is normal but any new problems your having sure be told to neo doctor aswell as keeping a leger for you log you days this will help you and your doctor

  • thedevilwearspradaz
    Hi ,my name is Yvonne. I was diagnosed last month with MS but they want to wait 6 months to do a repeat MRI to see if it is the progressive type or not. I had a spinal tap done and all it showed was 'leukocytes' in the CSF fluid. I know how you feel and ehat your going through but in my case im disabled in my left leg and have a unusual gait when i walk. One word of advice is try to find a self help group you can meet up with in person. This should help! :) *hugs*
  • capitolcarol

    Hi Yvonne - Are you on some sort of MS drug therapy program while you wait for the repeated MRI?   Your unusual gait is what unfortunately we have when we try to walk.  The neurologist can arrange for you to have "gait training" physical therapy.  I think I might try that myself, especially since my so-called walking is getting worse.  And your advice is good about finding a self-hel group, but I think we call them MS support which usually hold meetings once a month.  But you always contact us, we are the only ones that know what you are going through.  Carol 

  • Avatar

    I have a webinar that iI beleive would help you gain back your health - I dont' post it in respect to policies - but I will give you my email so I can email it to you valory.philipczyk@q.com. My friend had MS for 10+ yrs & his conditions are finally reversing.  There is hope! I am glad to see him gaining victory over this disease!  Valory

  • JenInMN

    Hello, I was diagnosed in September 2014.

    I've come up with some ideas to work around brain fog at work.  These may help you in school as well...

    - Find a quiet place where there are no distractions.  For me, I moved my office downstairs and way from my co-workers but still kept a spot by them for when I want the interaction.

    - your phone is a wonderful tool.  Use it for reminders!

    - after a meeting, I spend 10 minutes writing detailed notes so I don't forget what the meeting entailed. 

    - Last, don't beat yourself up over what you forget - it's part of the process!

  • hiscowgirl0613

    Im still learning ways to deal with this disease, and am a college student as well, two months left thank god.  Ive learned that it is easier for me to focus if i am away from others than in a while group.  I have been open with all of my professors because i have such common and severe side effects i often miss class, and they have all worked things out so that i can remain an A student.  Try talking to Your professors just so they know what is going on.

  • katemonster

    Hi, 

    I'm also new here, and I also was diagnosed while attending university. Passing my classes was really rough, but I did find a few things that worked for me, especially since Ritalin didn't help.

    First, I found it helpful to study with other people. Being out of the house helped me focus, and I never told anyone about my condition. I always suggested studying at a coffee shop would be more fun. :)

    Second, I learned the hard way that I could never count on my brain to work when I wanted it to. As silly as it sounds, I had to make schedule a time to complete an assignment, a backup time to complete the same assignment, and a third "oh crap it's really due" time. Usually, I would be able to get it done one out of the three times.

    Dizziness was one of the worst! I would work on an assignment for as long as I could, lie down in a dark room for a few hours, and try again. It was long, arduous, and painful. 

    My university had access to free tutoring, free math help, and free writing help. I went often, and it was very helpful to have someone double-check my work.

    I hope one of these strategies helps you!

  • skipk

    i was asked by border patrol in mexico if I was drunk. i wish i was. anywho if you or anyone live on the east coast and use a wheelchair the snow is a huge burden. www.chairsled.com saves us.

  • CowboysnAngels
    Hi there. So glad you have an appt with your Neuro. Mine told me to always report new symptoms with ms. Don't suffer in silence. My Neuro was recommended by the NMSS and he is awesome. I went through a few that had no clue, very frustrating. We are all glad you have come to this site. Please don't waste your time and energy wondering what other people think. Hang tough, you've got this and we are here for you!
  • Davids
    I suggest starting to open up to the people that matter to you most. A support group means everything to me it has been truly amazing how nice it is to feel comfortable around people when they have an idea of what you are going through. When I was trying to hide it I felt like they were looking at ne funny. Once I told them they did some research on there own, it wasn't long and that feeling went away. It helped to mentally deal with what was going on with my body. I also am glad you decided to come on the site. I didn't for a few years in fact this has been my first day talking on it, I must say it is nice knowing I'm not alone. 
  • christine32
    I am to with out a support system ... MS is ruff and hard to deal with.. every sysptom is different for everyone. There are days where I feel in a huge brain fog. Can't spell or speak words proply. Or remember words. The MS has caused Depression. I really just try to keep things quite as a coping thing but not sure if that's the right thing to do but it helps me sometimes. Reduction of noise and turning off my phone and just sleeping it off. Ohhhh being dizzy I can feel you on that one.. you bend over its like your going to fall head 1st on the floor or you feel way off balance just sitting in a chair. Dr gives me a nauseous medicine to help with that, but sometimes it does not work for me. I just lay on my right side and wait it out with the meds and make sure my head is adjusted with pillows just right so my head feels supported. Dr's don't even give me advice on these symptoms any more... hope the best for you. Hope my rip on the dizziness helps out let me know if it does help. Much love Christine
  • christine32
    I am to with out a support system ... MS is ruff and hard to deal with.. every sysptom is different for everyone. There are days where I feel in a huge brain fog. Can't spell or speak words proply. Or remember words. The MS has caused Depression. I really just try to keep things quite as a coping thing but not sure if that's the right thing to do but it helps me sometimes. Reduction of noise and turning off my phone and just sleeping it off. Ohhhh being dizzy I can feel you on that one.. you bend over its like your going to fall head 1st on the floor or you feel way off balance just sitting in a chair. Dr gives me a nauseous medicine to help with that, but sometimes it does not work for me. I just lay on my right side and wait it out with the meds and make sure my head is adjusted with pillows just right so my head feels supported. Dr's don't even give me advice on these symptoms any more... hope the best for you. Hope my rip on the dizziness helps out let me know if it does help. Much love Christine
  • mitzij23
    I too am a college student. I'm in graduate school and I'm very concerned about how my cognitive issues are effecting me... Going to neuro tomorrow for official diagnosis... Would love to connect with you and chat. I feel your pain!!

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