Originally Posted by karen P

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...

Originally Posted by Stellatum

How much Mestinon are you taking? This is a long shot, but when you talk about excess salivation, loss of bowels, and vomiting, I think about Mestinon overdose. I've read that a cholinergic crisis can be hard to distinguish from a myasthenic crisis.

I'm sorry you've been through such horrors, and still without a firm answer! I can hardly imagine.

Abby

Originally Posted by karen P

I was on 3 of Mestinon a day, then one Neurologist increased to 5 a day. Then, I went into having severe muscle twitching where an MG doctor stated it was Mestinon sickness, and decreased the dose. Now, the very bad twitching stopped, but, with overuse of the muscles, I still have muscle weakness twitching. A definite difference. The increased salivation is where the salivary glands let go, and those are controlled usually. Right when my body is going into a crisis, I have the vomiting, loss of bowels, and then can't use my body muscles to move anymore...downhill quickly...
REALLY GOOD THOUGHTS!! THIS IS THE DIALOG NEEDED TO FIGURE THIS CASE OUT!! Thank you very much!!

Originally Posted by Stellatum

Again, this is a long shot, but I'm just checking. When you say "three a day" or "five a day," you mean spread out, right? You're not taking the pills all at once?

Once my husband was walking backwards down a sidewalk talking to me, and I assumed he knew the telephone pole was there. He didn't. Ever since then, I try not to assume stuff.

Abby