Muscles
 

Hi all,

I had an MRI of all leg muscles after complaining of ongoing, significant atrophy. The neuro sent me to have the scan with someone who deals with this a fair bit. The scan said no sign of atrophy. So basically no fat anywhere in the muscles - the sign they look for. The thing is, there is atrophy without question. My bum is like sitting on bone now and hurts so much. My leg shape has transformed and shortened. I have no padding at all. It's exceptionally distressing.
How do I get this acknowledged. Is it even worth getting it acknowledged, I don't know. I just want to know what I have. I also have full body hell of sfn.
Does continuing atrophy mean paralysis at some point? I really won't be phased if that's the outcome as I know something bad is happening and have dealt with that feeling for a long time now.
We are looking at trial of steroid infusions some point soon. I'm devastated by the atrophy as it has completely destroyed my confidence and ability to just wear normal clothes and feel comfortable.
I'm pretty isolated as I don't work but how on earth do you build new relationships when you are dealing with these things. I won't tell new people or discuss it with current friends but I actually want to say to people ' oh I know I have no bum and tiny weird legs but it's because I have a weird disease and not because i try to look this way'. I don't think that would go down too well 😃

I have severe atrophy in my legs, my feet, my hands, my fingers -- everywhere, basically. and all my neurologist can say is, "ah, you're not that bad off. you could be in a wheelchair!"
which im not in. yet. but no thanks to him.
and, he has NO suggestions for what to do. none. zippo.

so, it's up to me. and i'm about to undertake a protocol involving an anabolic steroid called nandrolone. google it. bodybuilders use the stuff illegally. it can only be prescribed for a very limited number of conditions -- muscle wasting due to HIV and MS being two of them. PN (or, in my case, CIDP) is not among them but I'm working with a clinic who thinks it can get me approved. Most doctors will have nothing to do with it, because the DEA keeps a close eye on who is giving it out and the reasons why.

i don't know if it'll do any good. but the alternative is doing nothing and that's no alternative at all.

I'm not sure the cost but I think it's around $150/mo. Plus, in my case, I'd have to balance it with testosterone, at around $130/mo. Plus, lab fees, doc fees, etc. Cheap price to pay if it works. I'll give it a go and see.

Thank you Linter. I'm really sorry you alsobhabe tobdeal with this. It's almost like youvare losing your mind trying to get them tobtake it seriously. I will go look that up online