Aa
Myasthenia gravis, going generalized?
I was diagnosed about two years ago with ocular dominant, seronegative MG. I'm on pyridostigmine and prednisone. I have what I truly believe are some generalized symptoms coming on. Things like:
- my right hand is unable to pick up and carry heavy things - yet the neurologist I saw last says my strength is fine. Doesn't feel like it to be. A gallon of milk is too heavy for that hand.
- I go through spurts of time, days, weeks, where I am repeatedly biting myself inside my cheeks or my tongue. Then it will go away for a bit, or lessen, then eventually it will start back up again.
- crushing fatigue (I do also have CFS/ME and fibromyalgia) - can't function fatigue
- my voice is raspy, quieter than before, and nasal
- I used to be able to sing very well, recorded some backup harmonies for a band. Now? Sometimes I'm sounding like always. And sometimes I can't control my voice at all - the pitch is just way out there and I can't fix it.
- I'm regularly inhaling food or drink by accident
- I feel totally out of breath after any sort of exercise, like walking from the car to the office. Yet my PFT was normal. Even though after going through it, I was miserable. I wheeze a lot. Yet my asthma is under control. There's a difference between my asthma and this - it's really different to me.
I could go on. I took three pages of things to my neuro when I went in August. She blew me off and only let me get through three things before she basically just rushed me on my way. I don't understand. I belong to several Facebook support groups for MG. Many of the people in there have the same symptoms - some have a few, some have a few others, some have most, it varies. I am really upset that my neurologist is supposed to be a MG specialist and yet she blows me off.
- my right hand is unable to pick up and carry heavy things - yet the neurologist I saw last says my strength is fine. Doesn't feel like it to be. A gallon of milk is too heavy for that hand.
- I go through spurts of time, days, weeks, where I am repeatedly biting myself inside my cheeks or my tongue. Then it will go away for a bit, or lessen, then eventually it will start back up again.
- crushing fatigue (I do also have CFS/ME and fibromyalgia) - can't function fatigue
- my voice is raspy, quieter than before, and nasal
- I used to be able to sing very well, recorded some backup harmonies for a band. Now? Sometimes I'm sounding like always. And sometimes I can't control my voice at all - the pitch is just way out there and I can't fix it.
- I'm regularly inhaling food or drink by accident
- I feel totally out of breath after any sort of exercise, like walking from the car to the office. Yet my PFT was normal. Even though after going through it, I was miserable. I wheeze a lot. Yet my asthma is under control. There's a difference between my asthma and this - it's really different to me.
I could go on. I took three pages of things to my neuro when I went in August. She blew me off and only let me get through three things before she basically just rushed me on my way. I don't understand. I belong to several Facebook support groups for MG. Many of the people in there have the same symptoms - some have a few, some have a few others, some have most, it varies. I am really upset that my neurologist is supposed to be a MG specialist and yet she blows me off.
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