Thanks Angie! I like your last comments about age of neuros and their info. The neuro who discharged me went to med school with my family doc who just retired a bit early.

I think that my small sampling of folks with cold problems (best described with molasses!) shows that what I have can still be seronegative MG. The trick now is finding someone in my small city who can do a definitive muscle biopsy to rule out other muscle diseases and conditions like mitochondrial disease, that would put MG back on the table.

So I think that there is "value at getting to the end of the hunt" - even though the rheumatologist who questioned this doesn't think so. I'm having difficulty walking to meetings in adjoining buildings at work. Two days ago I was very weak and dragging my feet after rolling some chairs to a different room, and I took the elevator both ways! If I need to go on long term disability, I'll need to have a diagnosis. My family doc was great getting me an accessible parking pass by ticking off the box "neuromuscular disease, etc". But I'm sure the insurance will want more.

I'm now remembering getting into a very cold (-40) car several years ago and having to head to bed with blankets for 30 minutes afterwards. This has been going on a while!
Flutebell

I cringe when I hear the neuro that I work with says the phrase, "MG doesn't cause....". I just chuckle at the words and walk away.

He has told me so many times that my various symptoms were not caused by my MG. Then I end up proving him wrong by collapsing or something.

I kept telling him that the mestinon was making my eyes watery all the time. I was wiping them He said that the mestinon is not causing it. He kept telling me that and I kept insisting that it was caused by the mestinon. When I couldn't find anything in the literature online I called the manufacturer. What do ya know? It was such a remote occurrence in the trials that it wasn't significant to print. It only happened to like 30 out of thousands that participated but it proved my point. I had them fax the data to give to the doc.. I got a big kick out of proving him wrong on that one. Anyway, the point is that doctors don't know everything. They can only work from their own experience or observations/education. It they didn't have that they'd be the same as you and me. lol I just hate their arrogance....

@fluteball, you need another nuero, you are showing many signs of mg, in fact the choking vomiting and slurring show signs of myasthenia crisis. next will be unable to breath.. been there a few times... I drive 140 miles one way , past hundreds if not thousands of neuros.. just to see mine...musk positive mg...

Thanks Angie and Imdan,
I see my family doc next week and will definitely ask for a referral to a different neuro. The only one in town who sees neuromuscular dismissed me as needing to see a therapist when I saw him 6 years ago. But he also looks after mito patients so it could rule out/rule in two diagnoses with one visit.

In the meantime (I expect a year wait) I still wear my myasthenia gravis Medic Alert bracelet and assume I am seronegative MG and treat myself that way as far as safety concerns. I've never had a real crisis but have had several ER visits with trouble breathing - low potassium from diarrhea was the presumed cause.

I work a block away from our city's hospital and have an emergency button on my phone to the university's safety/security team. It doesn't even require me to talk, just to push a button and they are to come running with help.

Fingers crossed I get a diagnosis soon. Now that the weather is much warmer I haven't had word slurring for two weeks. But I've been putting on the A/C at work instead!
Flutebell