Multiple Sclerosis (MS) Support Group

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Anne8 05/07/2014

I have just finished 20 hours of PT, and I found out that I have lost a lot of muscle (my leg muscles are at 2/5 of their capacity) from being more sedentary than I used to be.
My PT was kinda negative, saying that the goal at this point is to maintain and not lose more, that recovery is not a realistic goal. I want to believe that she is wrong. . . during my PT sessions I met several people recovering from strokes/heart attacks, who are improving.
Has anyone built up muscle again, despite having MS? I would especially like to hear from anyone who might have a progressive form of MS (ppms or spms). If she is right, I guess I willl learn to live with it, but I would like to hear of any success cases out there. (I am thinking of looking for a gym which isn't too far from my house, where I could use the machines.)

marilyn4342 05/07/2014

I lift hand weights so if I fall I can use my upper body strength to help me get up. My doctor even noticed that my arms were stronger during my last exam. Now to work on my legs.

In my opinion you need a more positive PT.

ChrissyH 05/07/2014

Anne ... I would love to tell you that I have more muscle, but I don't. My Neurologist s are always saying that I am very strong. However since I have had to eat gluten-free, I have gained weight, which I am not happy about. I've been trying to walk more & use hand weighs at home. 18 months after looking for a horse therapy provider, I have finally found one & I start next Friday. I'm hoping that it strengths my core muscles, like it is supposed to.

If u join a gym, please let us know if it helps.

Anne8 05/07/2014

Do you think going gluten-free has caused the weight-gain? I have been cutting back on gluten too. . .at the moment my abdominals(stomach muscles) are practically non-existent and so my stomach looks a bit like someone who is 3/4 months pregnant. I swear, if someone asks me if I am, I will scream! My weight is more or less the same

dxat59 05/07/2014

I have lost most of my muscle but I think it's from lack of exercise. As for the gluten free diet, I have lost weight and lots of it from giving up gluten and dairy.

Gentle hugs, Linda

ChrissyH 05/07/2014

When I asked my Neurologist at Johns Hopkins he said that approximately 50% of gluten-Free patients lose weight right from the start & the rest will gain until their systems get accustomed to it. Eating gluten-Free took 99% of my pain away :) so I don't want to stop. My question is DO I WANT TO BE THIN AGAIN & IN PAIN. or ACCEPT THE WEIGHT GAIN & BE PAIN FREE?

???

Anne8 05/09/2014

Marilyn, did you do it with low weight free weights and then slowly build up? I foolishly too energetically tried some free weights a couple of months ago, and the muscles STILL hurt here and there. . .

HCARD 05/09/2014

Anne, I have RR ms. I became sick this winter (flu) and ended on my butt for 6 weeks. Except to eat or bathroom didn't move. I was so weak. I did many chair exercises, some stationary bike slowly a few times a day. Now I am stronger than I was last summer before getting sick. I hate that kind of exercise (PT) but it works. Now I am back working in my yard which is the kind of exercise I love. I always try to remember even thou my arms and legs don't work well they are not broken the problem is the plaques in my brain. So my vote is YES you can get stronger.

AIMLESS 05/11/2014

My mom (retired nurse) told me to work at making my "normal" workiunbg parts strong. For me that's my upper body. Arms, back, shoulders.

I do and have gotten quite strong. I also work my core group of muscles and legs (which are the weakest). I do something every day (week day that is). Going to a gym is impossible on a regular basis. I have a x bike and weights. Plus a wide opened floor for stretching and core exercises. I get just over a half hour a day. And that's hard. But worth it.

Good luck! I'll pray for your strength to return to you!

LvAmy

AIMLESS 05/11/2014

I meant "working" parts. How does that happen and I don't know it b/f I hit "add"?

AusSue 05/11/2014

I didn't think I was gaining anything with pt but I had myotherapy recently & when she did my massage one of her comments was "you have a lot of core strength in your stomach/middle area that you never had before" & that surprised me.
I have lost heaps of strength from arms & legs that it surprised me. She knows me well & I have been seeing her for years so I believe her.
It can happen & even after time has passed (& physio hasn't helped more than I can do at home).

Tom1965 05/12/2014

It's all a game of luck. MS hits us all in different ways. I've lost 24 Lbs of muscle, the old 6 pack is now a 1 pack. People have noticed that I lost weight and think it's great. But, when you go from 186 to 162. It's not the best plan. It seems to be a combination of the MS and the meds. They both do a great job of beating you up. I try to just stay active and moving. Hope for the best, Hope for a cure.

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