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


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Old 01-30-2013, 06:13 AM #21
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seishin seishin is offline
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Thanks, everyone.

Alice, your post was especially moving for me. You and Annie both have such a positive impact on the group with your medical knowledge, intimate understanding of MG & enthusiasm for helping the rest of us better understand & manage MG. We're so fortunate to have you on the boards.

I want to clone you....
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"Thanks for this!" says:
alice md (01-30-2013), AnnieB3 (01-30-2013), Tracy9 (01-30-2013)

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Old 01-30-2013, 11:53 PM #22
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That is amazing news...!!!

Please be sure you know your numbers on the breathing tests. When I went to the ER earlier this month, my FVC was just under 1. My NIF was 28.

I just want you to know that getting 5 days in a row of IVIG can often lead to aseptic meningitis. I just got over that, too. If it happens, a dose of IV Decadron can stop it in its tracks. You want to make sure you get some IV Solumedrol before the infusions, as well as Benadryl and Tylenol. I would take 800 mg of Ibuprophen (my neuro says it is much better than Tylenol) round the clock throughout and at least for 48 hours after the IVIG. Hydrate a lot, and hopefully you'll be okay.
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