Share this:
atlas
@atlas

Posts: 2
Joined: Nov 13, 2018

where do I find testing for neuropathic OH in the Phoenix AZ area?

Posted by @atlas, Tue, Nov 13 1:54pm

After over 3 years of dealing with orthostatic hypotension symptoms, I am now looking at possible neuropathic causes. In the past, I first thought it was excessive fluid in my legs, then I thought it was cardiac problems. I have been seen by at least 6 cardiologists in the past 2 plus years, with no definitive diagnosis or treatment protocol other than …. yes you have OH.

I moved to a new town at 5,000 feet over a year ago, which didn't help matters. My symptoms have been getting worse over the past 2 months. In the past, my symptoms lessened thru the day, and by mid-afternoon, my symptoms of light-headedness were mild. In the past two months, my symptoms have progressed to being full-time. I like to use the elliptical trainer for exercise, and I can see the same worsening of symptoms there. It takes 5 minutes of very slow movement before my body starts to work better, and even then I may experience very fast a pulse rate some time later to the extent I have to step off the machine to recover.

In searching the internet, I found that my symptoms closely relate to the condition called neuropathic orthostatic hypotension, which is also called autonomic neuropathy, or AN. The other terminologies that I think match are nOH, and NDAN. At any rate, I've been looking for treatment centers in the Phoenix/Scottsdale and surrounding areas. The only one I've found so far is Honor Health. I see they do tilt table testing, which I think is a first step toward evaluating my condition.

I would be very interested in any and all comments anyone out there has to offer.
Thank you.

REPLY

Hello @atlas, welcome to Connect. I have small fiber PN but had not heard off Orthostatic Hypotension. I did find some information on the National Organization for Rare Disorders here:
https://rarediseases.org/rare-diseases/orthostatic-hypotension/

I was recently diagnosed with lymphedema due to some swelling in my legs so now have to wear compression socks. Have you considered going to Mayo Clinic Scottsdale? I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

@johnbishop

Hello @atlas, welcome to Connect. I have small fiber PN but had not heard off Orthostatic Hypotension. I did find some information on the National Organization for Rare Disorders here:
https://rarediseases.org/rare-diseases/orthostatic-hypotension/

I was recently diagnosed with lymphedema due to some swelling in my legs so now have to wear compression socks. Have you considered going to Mayo Clinic Scottsdale? I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

John

Jump to this post

Hi John, thank you for the reply. In the past when I've contacted Mayo, they tell me they don't take Medicare, which is my primary insurance.

@atlas

Hi John, thank you for the reply. In the past when I've contacted Mayo, they tell me they don't take Medicare, which is my primary insurance.

Jump to this post

@atlas I know that Rochester Mayo Clinic takes Medicare but I don't think the Arizona or Florida campuses participate in some or all parts of Medicare. There is more information about Medicare and Billing here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Please login or register to post a reply.