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.
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.
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
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!
Yes ma'am. It for sure is a constant effort.
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.
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.
Do You Get A Very Soft And Or Gravel Voice When Your MG Is Moving Into Flare?
May A Crisis Sometimes Feel Like An Asthma Attack? I Have Never Been In Crisis, But Have Had Had Asthma In The Past.
I’ve Asked Not To Take Steroids If Possible To Side Effects. Is This A Wise Choice Or Should I Think About Trying Steroids