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Does Anyone Else Have Partial Paralysis Of Your Diaphragm? I Do And Have Lost All Volume In My Voice. I Sound Like A 3 Year Old Now.

A MGteam Member asked a question 💭
Savannah, TN

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
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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
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
A MGteam Member

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

February 10
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
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

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