Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Old 07-01-2012, 11:14 PM #1
BackwardPawn BackwardPawn is offline
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Join Date: Apr 2011
Posts: 211
10 yr Member
BackwardPawn BackwardPawn is offline
Member
 
Join Date: Apr 2011
Posts: 211
10 yr Member
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Hi all,

Just thought I'd give an update. My doctor was expected back on Friday, I'm not sure if she was in or not, but hopefully I'll hear from her in the next couple days. I cut back on my Mestinon quite a bit, as I was taking it with the expectation it would help me walk, but wasn't having much luck. I think my eyesight is better on the lower dose. I am having luck with the klonopin and muscle relaxants, though. I'm sure the heat is making my condition worse, but my legs are literally tightening up to he point that I can't move them every six hours, or so...then I take the meds and I'm able to walk with a cane until the meds wear off.

Hopefully the IVIG kicks in and smooths things over (port worked ok, but the nurse was upset when she heard someone without training messed with it), but I think I'm finally starting to get to the bottom of whats going on. My last neuro took me off all muscle relaxants and benzos due to the myasthenia. My condition got really bad at that point. My current neuro added them back in in low doses because she suspected some kind of arthritis. It wasn't until recently she started thinking SPS--and I'm thinking that's probably whats going on, or some variation of it. Anyway, I need to get some sleep. Thanks for the support.

Jeff
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