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looking for new dr


bbdeezy

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hello all and i hope someone can help. I am in Michigan and my family doctor will not treat my POTS so..............i am off on a serch. I cannot go out of state due to medical coverage and i am wondering what type of doctor do i even start with. I have went to the ones listed at ann arbor to no avail...they wrote it all off due to my sleep apnea and hypersomnia. Of which i am not treating bc i cannot wear that mask due to claustrophobia and ins doesnt cover machine anyway.so can someone help me as to what field i even begin searching in? Cardio? Neuro?

I also have Restless legs and thyroid and stressed tendon syndrome.

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bb deezy

I now see an endocrinolgoist.

Before him I saw a compassionate CFS doc but he was NOT open to tilt table testing. I did a letter writing campaign as I knew I wanted to see either an endocrinologist or somebody willing to see me, while KNOWING ahead of time, my symptoms. I wrote a one page letter explaining my illnss in a nutshell and would a doctor take me on.

It got a few letters of refusal and about 8 weeks later, finally got a "Yes" from my current doctor. One of the 'no's I got was a nice OBGYN who answered me himself (he knew my late brother in law) via him, I got the name of two good endo's.

Oh, my dx was only CFS, FM and certified sleep disorders when I did my writing campaign. My endo sees diabetics who often have autonomic problems so this can be a good fit with some ANS pts. The bottom line is a doc WHO WANTS TO HELP and is willing to learn new things or NOT threatened by a pt that does his/her homework. AND has some familiarity with ANS and OI.

Try this if you are desperate as it cannot hurt. Good luck.

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I have had phenomenal success with a young cardiologist. Take from that what you may.

Carmen

PS My cardio has MVP with a touch of dysautonomia himself and he gets migraines. I just love him!!!!

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If you are close to a University Hospital, I would try there. Call their neurology department and ask if they have a physician who is educated about POTS.

I have had the best luck with neurologists and my internist. You could also try contacting the neurology department at Mayo and ask who they would recommend in your area.

Good Luck

Dawn

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