The next appointment you have with your neurologist just ask if they're familiar with DAP(diaminopyridine).It is experimental but I have been using it in conjunction with mestinon and the improvement in my quality of life is more than I can express in a few sentences . Good luck in your journey .
ejh
Quote:
Originally Posted by StephC
Good Morning
Still not confirmed Dx but after release from hospital last week (and only bcs I insisted they couldnt send me home with nothing) last wednesday/thursday I took one mestinon 60 mg each day and did get relief although short lived. I was told I have to wait for doctor appoint until 9/18. It is shocking to me that the doctors are making what is a horrible situation so much worse when they have power to help! Dont they take some sort of oath about helping people? but i digress. :-)
Anyway, on Friday/Sat/Sun/Mon I took 2 pills again definite relief but short lived plus I think all my emotional stress about health, not being functional, worried about not being able to work, losing my business, etc isnt helping.
Yesterday I took 3 pills evenly spaced throughout the day and wow, what a difference last night and today. Today is first time in about 6 weeks I felt I can work a little bit.
I had appointment with my pcp yesterday who tells me she wont give me anymore pills until dx confirmed but says neuro can diagnose by giving mestinon shot and if I respond then dx confirmed. Not sure why me telling her I am responding to pill is any different than giving me shot and me saying I feel better but since I had not heard/seen that option wondered if anyone here knows about dx via getting shot?
I cant possibly wait till September 18 so just trying to figure out what I can do in meantime.
As always, thanks for your time/insight and advice.
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