Please HELP me!
I am going to give your smart noggins something to think about. I have seen multiple Neuro's and 3 out of 5 have confirmed dx of MG--Seronegative with 2 positive EMG's, 1 negative (1/2013)--Today Johns Hopkins Neuro stated, he does not think I have it, but doesn't know what I have.
I started 2009 with eye twitching, loss of peripheral vision, and needed glasses to help. (astigmatism on eye dr exam) then 3 months later, I had severe neck weakness and strain to causes headaches, and a COMPLEX Migraine where speech was effected. CT was fine...then 2 months later, shortness of breath, chest pressure when exercise or steps, Cardiologist sent me to get a ct of my chest and my Thymus was enlarged to 6cm...so they removed it.
All this and EMG gave me the MG dx. After this, I stayed on Mestinon and Imuran. I went in for a knee replacement, and the day after surgery, I stopped swallowing and was intubated. I have excessive saliva production while having MG symptoms/crisis. Then 4 months later, after small exercise again, experienced facial drooping, severe body twitching, loss of bowels, vomiting, and become paralyzed for days, and get IVIG and steroids in the ICU. I can't move my muscles to get my hands legs or body off the bed for 4 days, gradually coming back. When home, very weak for 2-3 weeks, still having double vision, muscle twitching, speech problems. After another surgical procedure, the same symptoms, and was intubated due to respiratory muscles being weak, under 1 liter of volume. This time, after intubation, I had to be on a NG tube b/c not being able to swallow for 4 days afterward. There was now 5 crisis', 3 intubations--the neuro doc states "crisis' are usual, but I don't believe that she has MG."
What do you believe could be the culprit? I need to get life back...I have symptoms of shaking muscles daily...