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Any Quality Dysautonomia Docs In Az?


lillybits
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We are looking at moving back to az after I get stabilized and We were wondering if there were any good docs out there?The last state that we can remember quality of life being better for me was in az. the more I read posts and research I am learning that I have had this much longer than i had thought. I thought it was all in 2006 but aai had lots of warning sighns that something was very wrong a long time ago. It would be an added bonus cause my two step sons live out there still!

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thank you! the mayo out here in minn gave me diagnosis but no treatment plan. i was diagnosed, given a script for an abdominal binder and midodrine with no follow up and he sent me along my way....looking forward to hearing about how it all goes lemons!

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Lilly,

Mayo Rochester is good at doing the diagnostic workup, non-existent with follow up. However Goodman in Scottsdale does excellent follow up. Only problem is getting an appt. He's getting way too well known :).

Lemons,

Good luck with your appt. Be prepared for the opportunity to have a doctor really listen to what you have to say. Let us know how your visit goes.

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ok thank you! that makes sence. they gave my a few dx and then sent me on my way.. i felt like i just got dropped pff at sea ha ha . az is the last place we lived that i can remember being healthy.its been a long time.8years since we were there last. I wrote to the autonomic doc i saw at mayo rochester and asked if he could send a referral out there for when we move...wish we could move now but we are waiting on my ssi.. hoping i get approved i dont know if you can move while you are waiting on a decision....

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I think ArizonaGirl also sees another group of dysautonomia specialists that she likes a lot in the Phoenix area. Can't remember their name. Neurologists I believe. Maybe you can PM her and ask her?

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I think ArizonaGirl also sees another group of dysautonomia specialists that she likes a lot in the Phoenix area. Can't remember their name. Neurologists I believe. Maybe you can PM her and ask her?

I've been to them too - good if there are autoimmune issues and you want to do IVIG - but, not the direction I wanted to go.

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Hello Lilybits. I have been going to Dr. Goodman at Mayo in Scottsdale and he is wonderful-Very compassionate. I don't have POTS, but autonomic neuropathy and orthostatic intolerance. I'm not sure about POTS, but for me, the heat is really difficult, so I was curious about the quality of life situation. I live in the desert and would love to be somewhere with more mild summers. But I've heard that cold winters can be just as difficult-I just have not had to deal with them since I've had this. I was just curious, is the heat harder on POTS? I know for me, if it's between 50-70, I feel great. So hard to find an area with this weather without the high California taxes. But of course Phoenix has the most awesome winters. I hope you can find a location that is better for you.

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I have an appt with Dr. Levine at Phoenix Neuro at the end of the month. Got my fingers crossed. They pre-ordered some tests that were ordered by my docs here in NM that no one can do.

The front desk is great as is the research person who does the scheduling.

I have a lot of Neuro stuff going on that is pointing towards auto-immune so here's too hoping.

My other choice, actually first choice, was Goodman, but when I called the Mayo about my insurance and directed to billing I was told it's hard for them to work with Medicare.

So will start with Levine and if it's not progressive and something he can work with then I will try to get to Goodman. Have a very good friend here who I'm sure I can catch a ride with every 6 months or so.

As for climate if you don't mind a drive or short flight, NM is pretty nice, I'm biast though, was born here. It's dry air, not as hot as Phoenix, more of a winter but rarely more than a day with snow.

We don't have tons of great docs. Neuros are slim pickings, and POTS Docs are pretty much non-existent. We do have some awesome Gastros and Allergists.

I've noticed I don't do well in the heat, but I absolutely melt in any type of humidity. However I've also noticed when we go to Alabama that my symptoms are slightly better and I've linked it to lower altitude, as soon as we start back up the ears and dizzy kick in more.

I do ok with the cold here, better than the heat. Again the humid cold is way worse.

Good luck with everything!

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The humidity in the summers here drain me. just trying to breathe out side is a chore in its self. I do know I need a neurologist i have tremmors and insane nerve pain and a lot of numbness and tingling. my neurologist i have now i think will be more than willing to write out referrals to who ever he thinks will be able to help.i will look into the drs that you guys reccomended! The winters dont like me too much out here either. Plus my husband is disabled dt an injury at work and the winters reak havok on his back and my daighter has atypical left sided cp and the winters make her freez up and cause her pain...hoping this will be a good move for the whole family! thank you all so very much!

kim

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It is really hot here in Phoenix. Have to go from air conditioner to air conditioner in the summer - but, there are more good months than bad. Our first choice was Albq., NM but hubby's job insisted on AZ and you do what you have to these days to keep insurance. I have family in AL too and do real well in the humidity - but, not so well on the coast there. My absolute favorite place and where I feel best - of all the places I've gone - is the Big Island of Hawaii.

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Charmed,

I also have Medicare and go to see Dr. Goodman at the Mayo in Scottsdale. Never had a problem with them or billing. I think you may possibly been given wrong information. It's just a little more expensive than other docs, but to me, seeing Dr. G is worth it!

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Charmed,

I also have Medicare and go to see Dr. Goodman at the Mayo in Scottsdale. Never had a problem with them or billing. I think you may possibly been given wrong information. It's just a little more expensive than other docs, but to me, seeing Dr. G is worth it!

Yes, I've seen both of them and he's my choice too.

Issie

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i know when we get there we will have to be on state medical insurance. so i am looking up who accepts that. Issie after you moved to az did you have to go back thru the testing and how long did it take to get your first apointment?I lived in az for 18 years. west phoenix area but then wanted to live with season changes and grass. we went to montana.. dont know how i did there cause i was preggers..then down to tx where the humidity with the heat kicked my butt abd now up here in wisconsin. i dont know if it is just the progression of the diseases or the weather/climate that is making me worse. But I have never been this bad.

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Lillybits, be very careful and do your research on health insurance before moving. AZ is one of the worst states - if not the worst. We're the only state that doesn't have medicaid. We have ACCHHS instead, and as a disability atty told us, it is NOT about giving you access. They've hugely cut back on the funding for it, so adult non-custodial parents can't even get it. It sounds as though you would qualify with your daughter, but be aware that it is very limited.

Someone here mentioned that Mayo takes medicare. Yes they do, though they do not contract as a provider, so they don't accept their payment as full. I'm sure you're well aware of the difference beween medicare and medicaid/acchhs.

On the Mayo website, they do not list ACCHHS, though they do offer a "charity" program that you may apply for. Dr. Levine's office (Phx Neurological Assoc) does list ACCHHS. They are affiliated with Good Sam hospital, which is one of the largest and best in Phoenix.

Good luck!

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oh wow! right now i have medicaid.. whole family does. my husband is on ssd, my son is on ssi and my daughter and i have regular state medicaide.life in general is scary enough with health insurance. i know i cant go without my meds or being able to see a doctor when needed.. thank you momdi! you gave me lots to think about!

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