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Finally Diagnosed, After 10 Years.


kalamazoo
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Half of me wants to cry, half of me wants to rejoice. what will I do with my free time now?

But on a serious note I was diagnosed yesterday after being testing for every single thing in the book. But I'm still worried because it was by a doctor who doesn't actually know a lot about pots patients and has only seen two prior to me in his 20 years of practice. Well, he didn't really diagnose the sub categories or anything but now I feel like I'm at square one. I feel like I have to change everything, even though I already have. But now I'm moving to Washington to search for more experienced doctors for my treatment, but I do know I will be getting something on the 7th as far as medicine wise. I need a beta blocker, anxiety, and who else knows. I'm not sure where this post is really going but I knew you would all understand.

But I do have some questions, has anyone seen any doctors on the west coast that are knowledgable or has grubb worked with anyone else's doctors? Any advice would be appreciated. Really anything at all, from diet, medications, doctors, or books. I would really appreciate it.

- Kala.

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Half of me wants to cry, half of me wants to rejoice. what will I do with my free time now?

But on a serious note I was diagnosed yesterday after being testing for every single thing in the book. But I'm still worried because it was by a doctor who doesn't actually know a lot about pots patients and has only seen two prior to me in his 20 years of practice. Well, he didn't really diagnose the sub categories or anything but now I feel like I'm at square one. I feel like I have to change everything, even though I already have. But now I'm moving to Washington to search for more experienced doctors for my treatment, but I do know I will be getting something on the 7th as far as medicine wise. I need a beta blocker, anxiety, and who else knows. I'm not sure where this post is really going but I knew you would all understand.

But I do have some questions, has anyone seen any doctors on the west coast that are knowledgable or has grubb worked with anyone else's doctors? Any advice would be appreciated. Really anything at all, from diet, medications, doctors, or books. I would really appreciate it.

- Kala.

Hey Kala. You're one step closer now to getting better I hope now that you at least have comfirmation of what's wrong.

If you can afford it I'd recommend going to the Mayo. They're fairly thorough (not sure how they compare to other autonomic centres) and I was satisfied with them. I'm not too sure about the geography of the USA but I think the Mayo clinic in Arizona would be close to the west coast? Maybe you could try there.

They'll rule out things like neuropathies, autoimmune issues or deconditioning I think. They seemed very thorough in the minnesota one. Hope it's the same in Arizona.

Hope you can make the trip! Good luck!

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Seems odd to say "congrats" for getting a diagnosis like this, but on the other hand, it IS nice to have an official title for something you know has been a problem for so long.

I think Stanford has an autonomic clinic now too, but you'll want to check on it. You might want to start another thread with a different title to get more input on the topic of west coast docs as I know we have a lot of members on the west coast. And have you checked the DINET web page with the link to docs who treat POTS etc? I know we have a member who has been working to update that list.

Good luck!

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  • 2 weeks later...

Welcome! I live in Kirkland, about 20 minutes out of Seattle. Let me know if you have any questions. I was diagnosed at the University of Washington, they have a autonomic testing center there. They also have a couple of Doctors there. I have been seeing a neurologist who use to work at University of Washington. She is in Everett. She is up to date with all the current treatments. Her name is Dr. Thyerlei.

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Thank you so much for that information on the university of Washington! I've been having a little bit of trouble finding any good doctors but granted I am still in alaska. I'll be in Seattle around august and plan on seeing doctors then. My doctor here did a bunch of test and followed the book but didn't know too much about pots. I want to know more as far as subtypes so I'm so thrilled they have an autonomy testing center because I'm fairly positive that's what I need. I'll probably send you a pm asking for a little more information.

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And Pam I was considering going to the mayo clinic as sort if my lest resort since it Is so far and the heat makes my body go into full panic mode as i lived there when I started getting really sick about 7 years ago. Hopefully I can find what I'm looking for In seattle. Thank you for the information though and my best wishes to you daughter

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