Hello everyone,
This is my first post here (was on Daily Strength but very frustrated with website updates). I've had many struggles for almost 5 years in getting a diagnosis. I'm antibody negative for AChR, MuSK and LEMS. My SFEMG in 2013 was negative. Last month's RNS and NCS and EMG were all negative (can't do SFEMG in our small city). I've been on Mestinon since November 2013 when a bigger city neuro did a trial for me. It was a "Lazarus effect" for me, giving me my life back in 3-4 hours windows. I started on 60mg x3 per day.

Breathing troubles overnight saw me increased to 60x4 per day in 2014. This week has been very hot and yesterday I was walking three blocks, with my walking sticks outside, slightly uphill. I was 1 1/2 hrs after my dose, usually in good shape at that time. I arrived at the theatre and couldn't open the door. I used the accessible entrance and collapsed on a chair. I was short of breath and breathing rapidly. I headed to bathroom to put cold water on my face and neck and needed help with the door again. After a 15 minute rest in the nice cool lobby I was fine.

Today was a similar adventure but was grocery shopping in an air conditioned store. Again less than two hours after a dose and my feet were dragging and breathing was rough. I had been awake at night with a bad leg cramp but nothing else, virus, etc seems to be at play.

The next appointment with my family doc is in 10 days, just a week before a trip to Europe. I need to figure out who to see next and where. I've had two neuros (one claims to be MG expert but really isn't) that I don't have MG. The one who put me on Mestinon says I don't have it because I only slur my words in the cold.

So I am seeking advice for my next GP appointment. I think I'll go when off Mestinon for about 15 hours to show him what I look like. I have other strange endocrinological issues so am thinking about a neuro who specializes in mitochondrial diseases as well as MG and exercise intolerance, a big problem for me.

Any ideas? I live in Eastern Ontario, Canada.
Flutebell