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Old 02-12-2013, 10:13 PM
bny806 bny806 is offline
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Join Date: Nov 2011
Posts: 576
10 yr Member
bny806 bny806 is offline
Member
 
Join Date: Nov 2011
Posts: 576
10 yr Member
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Limpy - I can't tell you how relieved I am to read your post!!! To hear that someone with LEMS has muscle wasting just makes me so happy I want to cry!! I have said for a while I feel like LEMS would be a fit.. they say maybe seronegative MG.. but then I feel like I have these other symptoms that just dont' fit with that..

I have read that many LEMS patients have small fiber neuropathy too- do you have any of those symptoms?? My biopsies came back very abnormal - showing non length dependent small fiber neuropathy....

It's really strange you say that about sitting up right... I feel like I can't get my chest to move, and like I have someone sitting on it when I am sitting ..but when I lean back on the couch or walk around I too am much better..

I also feel like I have atrophy all over - very symmetric.. my thumbs freak me out the most though!! I used to have good abs and was so in shape - a runner too.. the other day I looked down and asked where my bum went!?!

My jaw has ached in the past... and at times gets so weak I can't shut my mouth! it also feels like many of my muscles just vibrate when over exerted.. do you have this??

So, what is the process with getting DAP? Is it tightly controlled, and if so why is that? I feel like people more freely use mestinon, but not DAP.. curious why that is
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