Quote:
Originally Posted by bny806
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
|
When they wanted to do the surgery on my arms nd hand, my neck had been killing me for a while and since I had cervical disc disease, I figured the atrophy was from something in my neck, especially since my right hand was beginning to get weaker and was starting down that same path. I decided to further investigate the neck theory and that is how I met my neurologist who is awesome.
I can't speak to small fiber neuropathy as I have never been checked for that, but I do have a sunburnt feeling in the backs of the calves of my legs that drives me crazy, especially in the evening. That, too has improved with plasmapheresis.
I have the vibrating muscles, especially in my face when I am stressed or overly weak.
The reason why dap is not readily available in the US is that it is not FDA approved, but I understand that it can be obtained for compassionate use in the case of LEMS. My neuro is checking on that now.
02-12-2013, 10:31 PM
Reply With Quote
Similar Threads
Threaded Mode