It's been a year this month since the weakness started after a tiring and emotionally draining event in my life. Arm and leg weakness on both sides and weakness in my tongue. My speach was slurred and I had a lump in my throat that freaked me out so much that I went to the emergency room. Then after 3 nerologists and MRIs and vision evoked tests. I was told they thought it was myasthenia gravis. I had autoimmune stuff in the blood tests and another blood test that showed muscle involvement somehow?
I was too much of a chicken to do an EMG. I know, silly of me but I haven't done that one yet. My doc gave me mestinon which helped and the lump in the throat feeling went away and I could actually walk thru the grocery store without riding the cart. I even walked around the mall for 30 minutes and I could sing songs again without feeling like someones hand was squeezing my throat! 15 minutes of restt helped my head not flop to the side and things were better with the mestinon for a few months. Then the doc gave me prednisone and that made me so short of breath I went back to the emergency room a time or two but all the lung tests were fine.
So cutting back on prednisone helped but now I'm weaker. I did better on mestinon alone. The doc still has
ALS on the table and wants to do a single fiber test. Im not sure if I want to know. I like riding on the myasthenia gravis diagnosis and the mestinon and short rests help. The muscle weakness is always there and so are the random twitches all over, about 50 times per day. But after a year, would I be the same or somewhat better than when it all began?
I feel worse in my tongue area since I was cut back from the 30mg a day of prednisone to only 5 mg per day and it's only been 2 weeks sin e the drastic cut back so weakness might be from that maybe?
I have had constantly rigid leg muscles for a year as well and they are worse since the prednisone cutback also. I was only on the prednisone for 2 months. But even with this weakness, it's not as bad as it was a year ago when it hit me all at once.
I'm just not sure of the progression of
ALS and since non of the myasthena tests were positive, no one knows what it may be. I have twitched about 10 times all over just while typing this. Not only am I a big baby when it comes to EMG tests, I'm really liking the myasthenia diagnosis too. I'm just Hopi g that the year that has passed will point away from
ALS. Any thoughts would be so appreciated and I already know I should suck it up and do the single fiber test, I'm just not so sure I'm ready for the answer.
Thanks for letting me vent and ramble. This forum is a therapy session and I'm blessed to have found my way to it
Please excuse any typos as I am using my iPhone to type.
That really produces some double vision too. That seems to fall more in the myasthenia diagnosis too.
Not sure if I want to know 
