Is there a group on here for Multiple Sclerosis

harleigh67
harleigh67 Posts: 131
edited October 4 in Motivation and Support
Do you have MS? Are you trying to get into better shape to fight this disabling illness?
I AM and I was friended by another person today who also has MS.

I am wondering is there a group for people who have MS?Or do we need one?

They should call MS...The "BUT YOU LOOK SO GOOD"disease.
When You have MS its hard to understand what we are going through because we look so normal, although our insides are throwing a major hissy fit..... I feel others who have MS may be able to understand what your going through and be able to make suggestions on how to adjust exercise to make them fit an MSer better.

Replies

  • tiggerbounce411
    tiggerbounce411 Posts: 401 Member
    HAHAHA..RIGHT?! I don't care how I LOOK, I am a TIRED biotch. I have MS too. I don't let it dictate excuses for me, I use it as an excuse to do something about my health, instead of stopping me. Luckily I don't have many problems with it. I think in part because I refuse to give it that kind of power in my head. i am too young to be stopped by that. Though I realize there are others that have it much worse. I would be glad to be a friend to you. I have worked my way up to working out with Jillian Michaels, after doing this and walking for a month to get my body used to it. That way i am not putting too much stress on myself physically and MS can't get out of hand and act up.
  • kimbux
    kimbux Posts: 154 Member
    Hi - I don't have MS but my Father does... I can tell you that exercise is the best medicine for MS if you can do it. My dad gets out of bed every morning at 6:00 AM and lifts weights with his one good arm. He cannot walk and his left arm does not work. but, that does not stop him from doing what he can do. And, believe me, it has kept him going for about 20 years (he is 72).

    Please keep moving as long as you can and fight for your well-being. You CAN do it because you are WORHT it.

    :flowerforyou:
  • harleigh67
    harleigh67 Posts: 131
    The problem I have is I wake up and feel good and want to do as much as possible while I can, then I OVER DO and get fatigued, have you found a way to NOTdo this? I was unable to walk or get out of bed most days a year ago(vertigo full force and injury from a fall) I could barely walk a 1/4 mile a day so am excited when I feel good and can do things now its hard to find that happy medium!
  • tiggerbounce411
    tiggerbounce411 Posts: 401 Member
    The problem I have is I wake up and feel good and want to do as much as possible while I can, then I OVER DO and get fatigued, have you found a way to NOTdo this? I was unable to walk or get out of bed most days a year ago(vertigo full force and injury from a fall) I could barely walk a 1/4 mile a day so am excited when I feel good and can do things now its hard to find that happy medium!
    I would try walking for 15-30 min then take a break for a cpl hours. you will still burn, but your body can adjust. Mine has adjusted great. The first few weeks I was so tired I had HELL getting up. now that it has evened out, I have upped what I am doing to walking 30 min a day, and working out 10 of the 20 min workout with jillian Michaels 30DS untill I am used to it, then I will do the full 20. Seems to work ok so far. Positive attitude gets me reaaaaaally far with MS thank God! you can do it and we are all here for you.
  • Tari150
    Tari150 Posts: 17
    I'm new to MFP, and just thought I'd chance there might be someone with MS out there. Doing as much as I can while I can is a way of life with me. Unfortunately, the fatigue gets me and I end up not being able to keep up and end up farther behind than I was. The "happy medium" seems like an unattainable goal.

    I have started taking breaks throughout the day and that seems to help. I'm also trying to accept that I can't keep a scheduled exercise program. I've started walking on a regular basis as much as I can, but when I can't I do something when I can. This means I have to be flexible in what and when I do it.

    I like what tiggerbounce 411 says about not letting it dictate excuses for me.
  • BingoBaby14
    BingoBaby14 Posts: 4
    Hi there

    I also suffer from MS and I am finding it very difficult losing weight due to lack of exercise, plus I`m going through the menopause at the moment which has caused me to gain a stone.

    Maybe we can help each other with advice and tips?

    Linda x
  • Babzl1957
    Babzl1957 Posts: 37 Member
    :flowerforyou: Glad you are finding your way! xx
  • CAlexRose
    CAlexRose Posts: 33 Member
    I think a group is a great idea. I was diagnosed almost 3 years ago (weeks after my 30th birthday) and had many ups and downs ever since. Exercise, for me, is the best medicine and I'm thankful every day that I can do it.
  • AshleyRKnutson
    AshleyRKnutson Posts: 98 Member
    I was just diagnosed, so if there is a group, I'd love to join it, since everything is still so new to me.
  • 1Ciarrah
    1Ciarrah Posts: 55 Member
    If there is a group I would love to be a part of it. It is great being able to talk with others that understand what you are going through. I am 34 and was dx in 2000 at 21. So I have pretty much been dealing with this disease my whole adult life.
  • Vench
    Vench Posts: 56 Member
    I'd love a group of *kitten*-kicking MS sufferers. (I deal with MS among other things and feel a bit alone.)
  • kmac524
    kmac524 Posts: 24 Member
    I'm not the only one! Right now, the heat & fatigue are kicking my a**! I still get to the gym at LEAST 5 mornings a week. My day is usually "over" by noon. I stay indoors and try to rest. Boring! My main goal is to get to the gym every morning and concentrate on eating right.
  • kojak202
    kojak202 Posts: 2
    I've was diagnosed with ms 5 years ago. I'm unable to run anymore due to foot drop. I now use the elliptical bike to get in my cardio. That piece of machinery has been a blessing .
  • CA_Orchid
    CA_Orchid Posts: 3 Member
    I am in the process of being diagnosed (possibly) with MS. Just had my MRIs with contrast and I'm seeing the Neurologist on Friday. I have a plaque on the brain MRI and symptoms that started a year ago. Symptoms include weakness in both legs, loss of balance, abnormal gait, I can't run anymore and have a difficult time just walking. Any suggestions for excercise??? My legs feel so unsteady at times. I'm worried that if I work out they won't hold me? What is your experience?
    Thanks! Chris
  • froheadedyeti
    froheadedyeti Posts: 9
    I was diagnosed seven years ago at 25. Luckily, since the first couple of years after getting on copaxone my relapses have nearly stopped, and my most common symptom is fatigue. I started trying to get healthier around march this year and since then the exercise bike and elliptical machine have been my go-to exercises every morning. Having access to A/C while I work out is a must, and because they're both stationary with handholds I don't have to worry about falling. But what works for me may not work for you, everyone I know with MS has a different experience with it. <shrug>
  • AZDreamgirl
    AZDreamgirl Posts: 70
    a loved one was recently diagnosed with MS, it's changed our lives. I did the MS Walk with my team just 2 weeks ago. Clearly we don't know enough about this disease, and just slowing it down is unacceptable.
  • JediSwan
    JediSwan Posts: 455 Member
    I do not have MS but my husband does. If there's a group, I may just make a MFP account for him to see if that motivates him to get off the couch. :) He is tired a lot and I try not to push him. We do go on walks but one thing that man does is eat junk! Irritates me to no end so I stopped buying any junk food and now (especially this time of year) the only time he gets it is when Halloween is here and he gets into the kids' candy. But I would join the MS group to find things for my husband.
  • janehen12
    janehen12 Posts: 162 Member
    I just want to wish you all the best, from the bottom of my heart.

    My mum was diagnosed when I was 18 months, and I'm 20 soon, so a while ago. Spent nearly all my childhood in a wheelchair (I have no memory of her not..) and so I've seen it all first hand.
  • Francesca3162
    Francesca3162 Posts: 520 Member
    i have MS. I started this journey on MFP back in February after a relapse and round of steroids brought me to 200 lbs,
    decided to quit smoking, and start moving...

    I am now almost fifty pounds lighter and I walk or run(jog) almost every day.
    The more I do the better I feel.
  • AliciaStinger
    AliciaStinger Posts: 402 Member
    Hello,

    I wanted to mention that the website Everyday Health has a lot of information and tips for dealing with MS, including what foods might help. Here's the website - http://www.everydayhealth.com/multiple-sclerosis-basics.aspx - and if you sign up for their emails, they'll send you articles and tips. Only sign up for the emails that you REALLY want though (or use a non-primary e-mail address), because they will send at least one e-mail every day.

    Best to all of you.
  • vtmoon
    vtmoon Posts: 3,436 Member
    If you look up on the community tab, you are currently under message boards, click on groups right next to it and type "Multiple Sclerosis" a bunch of groups pop up, hopefully that helps you with your search :)
  • ladyprincess99
    ladyprincess99 Posts: 70 Member
    I am going through the same thing except my legs only feel weird in the morning when I wake up, Sometimes during the day not much, and If I stay outside too long walking I become fatigue feeling like I am going to passout, First sign happen this summer I passed out and both of my legs loss all feeling and I couldn't walk. I had a Normal mri with contrast but still seeing double in my right eye and I will be making an appointment to see a second neurologist, My regular doctor put in another referral
  • CkepiJinx
    CkepiJinx Posts: 613 Member
    I have been adding people who mention having it as I do too!
This discussion has been closed.

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