Hello,
It really is nice to read some of these stories. Makes me feel less like I am alone in this medical mess. About 9 months ago I started having problems with my vision. Occasional double vision, trouble focusing, having to look at the center line rather than straight ahead when driving...weird. I work for an eye doc so I was making them crazy with my complaints. Finally, as symptoms became more consistent and my lid was drooping daily, diagnosed w/MG. Saw a neuro ophthalmologist who agreed. Ice test was positive. Started me on mestinon 30mgx3 and pred 10mg and referred me to neuro who worked w/MG. After many blood tests came back negative (antibody and musk), EMG normal I was told I dont fit the mold. Sounds like many of you have been told this. Meanwhile symptoms are increasing. Fatigue is very bad as day goes on. Blephospasms of non drooping eye are really weird. Eye closes and I can't open it to save my life. Lasts 5 to 20 seconds. Breathing problems come and go, I feel like I cant breath, like something around my ribs. Pulse ox is normal and series of PFT's were normal.
Got pneumonia in Jan, before and after bronchitis several times. I was told MG and pred. has lowered my immunity. PCP wants me off pred but when dose gets lowered I seem to get sick so they raise it again. Took 40mg daily then tapered back to 20. Neuro last said to me "your symptons say MG but your tests dont so I dont know what more I can do for you...Really...??
I am going to see a different neuro in a couple weeks for a 2nd opinion.
I can only work a few hours a day. Anymore and I am so exhausted I have to go home and sleep. Some days are better than others but I certainly dont have the life I had before this all started..Makes me wonder where it will end. Hopefully this new Dr. will try a different treatment..One thing I know for sure, the more I learn about this disease, treatments and other peoples' experiences the little bit more in control I feel.