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Old 01-13-2010, 08:17 PM #7
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Nicknerd Nicknerd is offline
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Location: Toronto, Canada
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Nicknerd Nicknerd is offline
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Join Date: May 2009
Location: Toronto, Canada
Posts: 547
15 yr Member
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Hi Joanmarie,

Thanks for the info.. That must have been so tough having just had a baby, but your story is so inspirational- you truly are proof that drug-free remission is possible! And it came just in time for you to care for your baby- that's such a blessing! I wish that we could study you! j/k

I have the hand weakness too- I've had it for years, and I just talked to my neuro. on the phone about it. I had some testing done on my arms, and it showed some denervation in the muscles that control finger flexion. He said that MG can do that sometimes...Do you get finger-drop? I get it in the last digits on each hand after typing for a while, and also after cleaning...I also get hand-drop sometimes too...I have a lot of fluid-retention in my fingers as well, with really red tips, and sometimes bluish moons in my fingernails (my rheumy says it's from Raynaud's)...

Sorry that the MG is back, but I'm glad that Mestinon controls it to some degree, but that's terrible that you have the allergy to it! Benedryl knocks me right out- I can't take it at all...I was almost hallucinating when I took it in the hospital for the IViG, so that's a bummer that you need it in order to take the mestinon. Have you tried any of the other types of cholinergics? There are a few other ones...

I think that I asked you this before, but have you considered having another thymectomy? Maybe the pieces that were left over have grown and become active again..

The only muscles that seem to be unaffected by my MG are my legs and eyes...I do have problems with stairs a tiny bit, but I think it's from being really outta shape from sitting at this comp. all the time! lol...My eyes are sorta affected (mainly not being able to close them all the way), but it's negligable compared to the other areas...

Anyway, my neuro. said that we're definately not going to try anything too toxic for now (like the revimmune) until we see if the less-toxic drugs will work...I just hope that I don't get warts and stuff and oh yeah, that it works!

Nicky
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