Hey guys,

I've had some symptoms that have been going on for a long time now and havne't been able to get a diagnosis for. I'm begining to think it's dysautonomia. When it's really hot, when I walk for a bit (not far at all), my hands swell like balloons. I also have Mitral valve prolapse, am very flexible, get a racing heart beat about 30-mins. after eating, feel faint often when doing any kind of exercise (even before the MG), and I've actually NEVER been able to tolerate heat. My mom reminded me of when I was very young, I'd sleep with the fan on all year long. One time, in February (freezing cold outside), when I was 15, I slept on the balcony of my grandma's apartment because I could not take the heat. When I stand, my bp goes down instead of up...It's not a 'major' difference, but my doc. confirmed it. I also sweat profusely. In a way, I'm hoping it's dysautonomia because it's better than heart failure or pulmonary disease...Argh...I wish these symptoms would go away...Sorry, I sorta wanted to share this and just vent a bit...

Does anyone here have dysautonomia as well as MG?

nicky

I am so sorry you are suffering like that. I have no clue as to what could be wrong but I hope your Dr finds out soon.

You have "heat" in Canada?

Sounds like an autonomic problem to me. The "sweat test" is one of the ones they do. I've had that crap tested for but I was ok. Now they think I may have orthostatic intolerance but I am done with testing for the moment.

Isn't it funny, and stupid, the way we ignore our health problems? I can say stupid because I ignored mine my entire life too. I still can't believe I've had myasthenia forever. Though I would never call you stupid, Nicky! You are very smart.

I definitely think you should have the autonomic testing done. Does someone in Canada do it?

I would say that an endocrine source could be a possibility except that if it were endocrine for that long, you would be much sicker.

That really stinks. And I thought hot flashes were bad. Can't imagine an entire life of that! You deserve a medal; or a cold suit to wear.

Annie

Have you gone to the DINET site?

When I read through old posts there, at least one person had been diagnosed with both.

Does your heart race at other times too? How flexible are you?

Hey Nicky,

I'm sorry you are suffering with this on top of the MG. I hope you find the right Dr. for a diagnoses and treatment soon. Take care and I'll be keeping good thoughts.

Hugs,
Pat