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

 
 
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Old 08-29-2012, 07:17 PM #1
hajile99 hajile99 is offline
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Join Date: Aug 2012
Location: Las Vegas, Nevada
Posts: 70
10 yr Member
hajile99 hajile99 is offline
Junior Member
 
Join Date: Aug 2012
Location: Las Vegas, Nevada
Posts: 70
10 yr Member
Default The Diagnosis

I've officially been diagnosed with Myasthenia Gravis. For those of you who looked at/replied to my previous thread, he didn't really say whether he thinks the Amlodipine I was taking would have brought it out or not, but given that it's on a list to avoid, I assume it's a good possibility.

He's prescribed me 60mg of Mestinon three times a day, as well as 10,000 Units of Vitamin D, 500 mg of Magnesium and 1500 mg of Calcium. In addition, we're working with insurance to get an IVIG approved. That would be 5 days straight plus one day a month for a year, although that could change (either up or down) depending on my reaction to it. And finally, we're scheduling an appointment to check my Thymus and see if it is enlarged or not.

So, generally speaking, what should I expect from the Mestinon and the IVIG? I know and have read about the side effects, but what are some of your experiences with it? Did the Mestinon help with the symptoms? And if so, how long did it take to help and to what extent? And how is the IVIG? I'm not a big fan of needles (although considering all the blood I've had drawn this year, I'm a lot better than I used to be), so I'm not a big fan of having one shoved up my arm for 4-6 hours for five days.

Thanks for all your input. I'm sure I'll end up with more questions once treatment starts and appreciate all the insight you can give me into your experience with the disease, the meds, etc.
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