Postural Orthostatic Tachycardia Syndrome

I was recently diagnosed with Postural Orthostatic Tachycardia Syndrome, a rare heart condition. I live in Arizona and cannot find a specialist. I don't mind traveling to a different state...does anyone know of any pots specialists close to Arizona?

[Mom2four85]

check out the national dysautonomia research foundation's site as well as Dysautonomia information network and the Dysautonomia forum here; in each place there are doctor's listed and information for reading, plus you'll find POTS to be a very common ANS problem so you'll get lots of support and information.

If you're in AZ; Mayo clinic is there but I don't think it has an autonomic testing center much like the one here in FL; they can do some tests but not the full set you'll need.  I've been referred to Mayo Clinic in OH and to Vanderbilt in TN, but it's such a trip I haven't gone yet.

If I had the means and the way I would go see the main man himself - Dr. Blair Grubb he's at the Medical University of Ohio; but others have said it takes awhile to get in to see him.  After you see him and his staff then they can coordinate care with your local doctors.

good luck; let me know if you have any questions =)

[beema36]

If you post this on the autonomic dysfunction site they have names and places of drs who treat this. I believe Mayo Clinic has a clinic in Arizona that's treats this.
I also have pots so I hope you get a good Dr that can help you.

[clala]

Thank you! Im already a patient at Mayo. I see a neurologist that said they don't have one there. but I will post on the autonomic dysfunction site!

[Mom2four85]

check out the national dysautonomia research foundation's site as well as Dysautonomia information network and the Dysautonomia forum here; in each place there are doctor's listed and information for reading, plus you'll find POTS to be a very common ANS problem so you'll get lots of support and information.

If you're in AZ; Mayo clinic is there but I don't think it has an autonomic testing center much like the one here in FL; they can do some tests but not the full set you'll need.  I've been referred to Mayo Clinic in OH and to Vanderbilt in TN, but it's such a trip I haven't gone yet.

If I had the means and the way I would go see the main man himself - Dr. Blair Grubb he's at the Medical University of Ohio; but others have said it takes awhile to get in to see him.  After you see him and his staff then they can coordinate care with your local doctors.

good luck; let me know if you have any questions =)

[Mom2four85]

oh my...sorry my brain lol Mayo Clinic = MN ....I think; my mind just went into a fog and for the life of me I can't think of where Mayo is :(  I was thinking Cleveland Clinic = OH.

[clala]

Thank you so much! Im going to check out Dr. Grubb and see if I can see him!!

[Mom2four85]

That's great to hear...please let me know how it goes with him; I'm drooling with jealousy hehehe

[clala]

I just made my appointment today, its a long year wait so Ill let you know in a year how it went haha

[Mom2four85]

good deal =) you may want to tell them that if there's a cancellation you'd like to be notified if you can  make arrangements to get in that quickly