pls and muscle loss

[nancyg]

First post...Does anyone with PLS notice that they are getting "thinner" through their arms and legs? I know atrophy is more related to ALS but after 3 to 4 years of symptoms, maybe longer and a PLS diagnosis, I have noticed that my husband is looking thin on one ankle and his upper arms. He's been inactive for the last two to three years, still able to walk unaided, just not able to exercise. New symptoms are pain in neck and lower back area. Much pain with spastic legs and restless arms. EMG's showed benign when done as of last year. Anyone have any thoughts?

 

[johnnyliverpool1]

no atrophy just lack of use..i would say........pain caused by by tension on joint tendons by spasticity...better info will arrive soon no doubt....but food for thought for now..johnny

 

[nancyg]

that's what i was thinking. let's hope. after the 3 year mark i was beginning to get to a point where i was not so frantic all the time. i can handle something SLOW. it does seem that no matter the diagnosis, everyone is so different. i saw a site where a lady had arm pain and within 14 months was totally disabled but still labeled PLS due to "normal" emg's. I guess the label doesn't matter as much as the progression because it's all about the same at the end of the day. Am I right.

 

[Tokahfang]

How is his overall weight? Spasticity and restless movements don't exercise a muscle much for growth, but they do cut into your calorie intake a good bit! One particular guy with a bad case of CP has to eat about 4x as much as someone else his size. Ultimately, though, if you can't really use a limb for more than a few basic daily activities, you're not going to keep a lot of muscle on it. As long as it isn't hampering his function, I wouldn't worry about it too much.

 

[nancyg]

Thanks guys, for responding. Overall he seems thinner. When the pain is bad so is the appetite. You know the drill I am sure. Guess I better start baking.