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Phoenix Area Pots Patients...


bellajulz

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Looking for Phoenix area pots patients to compare doctor information... Does anyone have a good doc that is worth referring? How familiar is your doctor with treating pots? Any other information that is pertinent to the phoenix area.

Thanks ahead of time!

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Right now I am keeping everything the same with my medications until I see my rhemetologist and go from there. But he told me when everything is said and done, if my hr is still out of control he would do a pacemaker. ( I can go from 40's to 150's very quickly)

I am very new with him, but he is a great listener and takes his time with me, unlike most of my other doctors (UGH wont even get into it with my neurologist).

I will update soon. I am seeing him again next week. He just started me on 2.5 mg of midodrine at bedtime to keep me from crashing so bad. So far its been helping and I have not had any hypertension because he decreased my florinef which wasnt doing any good.

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Dr. Goodman at Mayo Scottsdale. Great listener. Very patient. POTS specialist. Trained with Dr. Low at Rochester.

Dr. John DeGuzman is a great primary care, but I think not taking new patients right now. He doesn't treat the POTS per se, but he's a terrific doc and seems to understand how POTS might affect everything else.

Dr. Marwan Bahu is an electrophysiologist at Biltmore cardiology. Not my favorite personally, but the medication changes he made have proved to be very helpful, so that's saying a lot. I think he's better with the cardio symptoms of POTS than the neuro symptoms - duh! He has some POTS patients.

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I saw Dr Goodman in Scottsdale and I would recommend him. He was very professional and a good listener. I wasn't sure if my insurance would cover him or the testing but it was alot cheaper then I thought it would be. The best $$$ I ever spent on my POTS patients. Dr Goodman charges half what I pay to see my local I don't know anything about POTS dr. I live about 6 hours from Phx, if I live 2-3 hours away I would commute to see him on a regular basis, 6 hours is too much.

I have nagivated the disability system for years. I got sick when I was in law school so I did not finish but I tried to use what I learned to help others with disabilites. The most important thing is functionality forms. If you have a dr that is willing to fill out a functionality form, you should be approved. Remember the person that first looks at your application is not a dr or even a nurse so a functionality form makes it very clear that you can't perform certain tasks and they will have a hard time denying you. I got disability approved within 45 days of them getting my funcationality report. The thing they question was if I needed a rep payee since I did not drive, or go out of my house much.

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I don't really have doctors to post - just yet. Since I just got out of the hospital - I'm trying out new doctors. I got a cardio doc named Maki. The primary that I got an appt with is the same one as nowwhat - Backer. The neuro that I'm going to check out is Moschonas. Pulmonary doc is Horonenko. I don't know any of these docs and can't say how they are. I did talk with Maki and liked him, but he admits he knows nothing about POTS - but seemed willing to follow up with me and learn. Didn't try to force anything - but listened well when I explained how my body works and why I couldn't take propranalol (rebound hypertension and only able to take it one time a day.) So we will see! Anyone know these docs or anything about them?

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Another vote for Dr. Goodman at the Mayo Clinic in Scottsdale!

MomDi: Stephanie Lake was my attorney for my disability matters. She was great and got me my disability very quickly - the judge during my court session gave it to me immediately.

Everyone in the Phoenix area: Why don't we all get together one of these Saturdays? I think it would be great!

Cheers,

Jana

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Everyone cross your fingers. I called to try to get in with Goodman at Mayo. That neuro that I saw there has to okay me being transferred. I really hope that I can get in with the specialist and not have to go to a doctor that has to learn about it. I'm waiting for them to call me back this morning and let me know if she has agreed to transfer me. Here's hoping!!!!!!!!!

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I can't drive that far either but can hitch a ride also.. early evening works best for me... maybe at a nice restuarant? Im coming from Surprise, but def worth the drive .. how's April 9th?

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