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Posted

Good question, I wish I would have thought of it. I have an appointment in June with Dr. Chemali and he is a neurologist specializing in autonaumic dysfunction. I just assumed he would be informed on mcas...maybe I need to look into that before I put all my eggs into that basket. Im pretty sure thats whats going on with me too and my pcp has never heard of it relating to pots.

Thx for posting this, u may have saved me some time. and Im sorry ur haivng to go through a doctor change. It can be frustrating but it can also be hopeful so good luck in ur search =)

Posted

We took my daughter to see Dr. Gotlieb at Stanford (a hemotogist who speciaizes in mastocytosis). My daughter has POTS and we were convinced that she had a mast cell disorder because she had all the symptoms. It turns out that she does not have a mast cell disorder but, instead, a problem with her immune system (caused by a virus which started this whole thing).

I had also e-mailed Dr. Afrin and he was very helpful in discussing with me what tests her primary doctor should run to start the process to see if she had a mast cell disorder.

Good luck!!

Posted

Thanks! I do have a hematologist for severe anemia. I should call and see if he knows anything about this. It's definitely hard to find a dr that knows anything about these types of disorders. It would be great if I lived closer to one of the well known drs.

Posted

Thank you for posting that link! I have almost every symptom on that list. I got really excited when I searched a few terms and found a name for the red spots I get, telangiectasia! I knew they were blood vessels but didn't know the name.

If anyone would know the name to these other spots, that would be even better. They are about dime size, always on a joint in my fingers (top or bottom of hand), itch and hurt at the same time. But they don't hurt on the surface, they make my joint hurt. Usually last a few days to 2 weeks. They kind of look like a single hive. I've went to my pcp before pots diagnosis and she was clueless.

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