Muscle atrophy

[Suzannah]

Hi all,

I was recently surprised to find that my right leg has atrophied significantly. A pretty big chunk of my gastroc (calf) muscle is suddenly just ... missing. And my whole leg and foot are now much visibly thinner than my other leg.

My working diagnosis is HSP, hereditary spastic paraplegia, which is a pure upper motor neuron disorder. Atrophy is not one of the clinical features. I suspect that it may be due to the pretty hefty rounds of Botox injections that I have had in that leg. But of course I'm also concerned that my HSP diagnosis is wrong, and that this is the onset of LMN symptoms.

I know that people with ALS cannot build muscle back up again once it is lost, but what about people with pure upper motor neuron syndromes? Can I build that muscle back up?

Other than having a progressive neurodegenerative disorder (you know, other that THAT), I am a very healthy, active 35 year old athlete person. I workout all the time. Am I/can I be making things worse?

Thanks,
--Suzannah

 

[gooseberry]

I think a trip to a neuromuscular specialist would be in order. If you are working out and experiencing atrophy at the same time you should see a specialist.

 

[MaxEidswick]

>I think a trip to a neuromuscular specialist would be in order. If you are working out and experiencing atrophy at the same time you should see a specialist.

Ditto that!

 

[Suzannah]

Hi, thanks for the responses.

I do have a neuromuscular doc, and I was able to speak with her about this issue. She felt it was likely due to the Botox but wasn't sure.

I was just wanting to get a sense of whether anybody with UMN issues has been able to successfully restore muscle, and what people have been told about exercising. None of my treatment providers seem to be able to provide me with any helpful information about anything. It's been really frustrating. I've put together my own "treatment" program, but I have no idea if I am doing more harm than good.

Thanks,
--Suzannah

 

[MaxEidswick]

>what people have been told about exercising.

exercising muscles w/ mnd will not strengthen, but destroy -- tear down w/o buuild up :-(

 

[Clearwater AL]

Do... but don't over do... what you can do.

 

[traveler1]

Hi Suzannah,

The question of building muscle and "doing but not overdoing" is befuddling me as well. My understanding is that you can strengthen the muscles that haven't yet been affected, thereby somewhat offsetting the muscles you've lost. I haven't found anything on rebuilding affected muscles…bummer. The difficulty for me lies in trying to find the "right" amount of exercise. When I'm on a roll and feeling very motivated I want to keep doing more. I want to walk that extra mile or two, or add more weight to the exercise machines, and while I'm doing it, I feel great. (Endorphins, and all!) The problem is I'll be doing well for a time and then suddenly, pain and weakness. My physical therapist and I were just discussing this today. She's also frustrated by the lack of knowledge regarding the right amount of exercise. She wants me to increase my strength and improve my balance, but she'd be the first to admit that the magic exercise formula hasn't been uncovered yet and she doesn't want me to be the guinea pig.

I also have visible atrophy in my legs, but mine isn't related to botox injections. Another mystery! Upper motor neuron disease is quite the puzzlement!

Good luck and take care.