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Old 08-19-2013, 09:51 AM #1
mutant-robot mutant-robot is offline
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mutant-robot mutant-robot is offline
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Hi Sarah,

I also have POTS dx- probably hyperadrenergic type secondary to Ehlers Danlos Syndrome- had symptoms my whole life... I got my POTS dx after I was on an EDS board and someone was talking about pre-syncope and I looked it up, ha- thought it was normal to have vision black out when standing as it had happened my whole life! I am also new and working on possible MG dx. My POTS has been fairly well controlled, but having a battery of symptoms and fatigue lately.

Nice to meet you
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Old 08-19-2013, 03:55 PM #2
sarahbear sarahbear is offline
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sarahbear sarahbear is offline
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Bny,
I know the feeling, food its a chore some days =( I'm really glad the ivig is helping you,i hope u find some relief soon.

Mutant,

Eds is a component I've been interested in, but so far i have not found a doctor willing to test. I know how it is, I've been blacking out since the day i could stand on my own..lol I've had full conversations where i couldn't see or barely hear waiting for the world to come back in focus, all with a smile, faking it.I'm told i have neuropathic, autoimmune pots. I hope they get you figured out so you can get your symptoms back under control
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Old 08-19-2013, 04:54 PM #3
mutant-robot mutant-robot is offline
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mutant-robot mutant-robot is offline
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Feel free to message me with any EDS questions. I've had my dx for over 20yrs. It is weird looking into MG world with newbie glasses- with EDS I'm used to being one that has been around and can answer most things

Good luck!
Karen
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