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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-07-2012, 08:51 PM | #11 | ||
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Grand Magnate
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Lisa, Did you have the IVIG? Did it go okay?
Tony, I honestly shouldn't be giving any advice on IVIG, since I can't have it and never have. Most of what I know is from friends of mine who get it, from reading and from you guys here. It sounds like you are getting such great care, Lisa. I hope that reassures you! Annie |
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10-07-2012, 11:07 PM | #12 | ||
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Junior Member
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Quote:
Lisa |
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"Thanks for this!" says: | StephC (10-08-2012) |
10-08-2012, 02:03 AM | #13 | ||
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Junior Member
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Hi Annie,
Yes, I have had two days of the infusions and I have improved a little already. My speech is much improved and I feel that my neck and arms are a bit stronger. The only problem I have had is a annoying headache, but I am working on hydrating better before each infusion. I will keep you up to date. thanks for asking. Lisa |
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"Thanks for this!" says: | pingpongman (10-08-2012) |
10-08-2012, 11:12 AM | #14 | ||
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Member
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Lisa;
I have been getting infusions for 3 1/2 yrs. My nurse now, who's company used to have an infusion center in the offices on Dr.s Farbman and Ginsburg had to close when their MS Dr. left the group. Most of her infusions were Tysabri. I will double check with her but I think she had only 3 MG patients she infused with IG for MG. 2 had the initial 5 and a just a few after. And that was all they needed because of their improvment. She had one patient that had the 5 and never needed another. I HOPE YOU FALL IN THIS CATEGORY. scrubbs |
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10-08-2012, 10:33 PM | #15 | ||
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Junior Member
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I had an absolutely brutal, completely debilitating headache after my second day of the five day infusion. The nurse on the third day (while I was still suffering from the headache) advised me to take some Benadryl, as well as alternating doses of ibuprofen and Tylenol. It helped after several hours...and if I had even an inkling of a headache the following two days, I would start taking the meds again and it kept it in check.
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