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Real members of MGteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

My neck and hips hurt constantly from sitting up or trying to walk very long. How often do y'all have to have aphorisms or plasmapheresis? I had a bad reaction to IVIG. I don't know what to do anymore.

February 9, 2024
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A MGteam Member

I have issues at time with raising my soft palate in upper mouth/ throat when I’m weak. Sometimes it’s hard to time my mestinon just right it’s a constant effort of trial and error

February 10, 2024
A MGteam Member

Linda, It helps to time my Mestinon with my meal times. I take 60mg 4 times during the daytime. I take it at breafast, lunch, dinner and bedtime. Hope this helps you!

February 11, 2024
A MGteam Member

Yes ma'am. It for sure is a constant effort.

February 10, 2024
A MGteam Member

I’m so sorry about voice loss. I feel fatigue in my diaphragm when I need prn meds. Usually mestinon helps. I am a singer/ musician/ music therapist and I do routine deep slow breathing exercises and relaxation. I also sing daily and play flute to exercise my diaphragm, throat and mouth muscles. I feel weakness if I sing or play for too long but regular short periods of practice helps.

February 10, 2024
A MGteam Member

Yes, I lost voice too. I feel, and sound, like I'm drunk when my MG is acting up!
I have regained most of my voice with treatment. I take Vivgart infusions, Mycophenolate and Pyridostigm.

February 9, 2024

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