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


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Old 04-28-2010, 08:13 PM #1
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
Default Still here

Hi Everyone,

I am Danny's wife. He reads the forum sometimes but it can be overwhelming. I'm on here quite a bit - reading, getting ideas & cheering you all on. I'm very glad he found this community for support since this disease can be so crazy. I'll probably do most posting since reading and typing can be tough for him at times.

Since he never updated after his surgery, here is the latest (abbreviated version): The surgery went well. They removed the thymoma - about the size of an egg & hyperplastic thymus gland. He had several rounds of PLEX in the hospital & came home in alot of pain but basically symptom free w/ Mestinon. About 5 mos after surgery (Feb '10) we started to see alot of progression. Ptosis was bad, double vision never got bad really bad again but now he has lots of blurriness - do any of you have that? Also, difficulty lifting arms above head, slurring/nasal speech, minor breathing trouble & generalized weakness. After discussions w/ neuro we decided on PLEX again & he just completed 4th of 5 treatments. Seeing some improvement, but not as much as we had hoped. Currently, only taking 60mg of Mestinon every 2 hours & ext release at night. Holding off on Pred & Imuran for now.

Hope you all are doing well ~ Alison
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"Thanks for this!" says:
diva.baby (04-28-2010), Nicknerd (04-28-2010), Pat 110 (04-29-2010)
 


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