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

Posted by atlas @atlas, Nov 13, 2018

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.

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

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@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

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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.

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@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.

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@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

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Hello @atlas. I was recently diagnosed with Autonomic Neuropathy (also called Autonomic Dysfunction). Like you, I have Orthostatic Hypotension too. Phoenix Neurological Associates is now Honor Healthcare and that's where I was referred to in 2015. (In 2015, I was diagnosed with severe Small Fiber Neuropathy).

There were several tests performed to confirm my Autonomic Neuropathy diagnosis which included: tilt table, sweat output, breathing, etc. Those tests were done at the Scottsdale Mayo Clinic. I also had a brain MRI, hearing tests, EMG with NCS, and saw an Otolaryngologist. Blood samples were taken and also urine, which were sent to the Rochester Mayo Clinic for very specific tests – checking for autoimmune diseases, diabetes and encephalopathy.

After all test results were in, my diagnosis was determined. I don't have diabetes or an autoimmune disorder, so my Autonomic Neuropathy is deemed "idiopathic". My symptoms are being treated by medication and it has helped tremendously. I no longer battle dizziness/vertigo and fainting to the ground. My blood pressure stays at a healthy level now, during the day.

I wish you the very best and hope you see a Neurologist soon, who will help you.

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Hello @atlas. While I’m am not well versed in your particular condition, I see you mentioned the Mayo Clinic and @johnbishop concurred. He has proven to be an amazing asset and wealth of info here. I would also google Dr Roberto Bomprezzi. He practices out of UMASS, but I believe spends and practices part of the year in Scottsdale. If you can meet and dicscuss your condition with Dr. Bomprezzi, I highly recommend him. He is a neurologist who specializes in these types of conditions. Cannot say enough about him…

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Hello @atlas. I have become quite well versed with your condition over the past 5 years. I am a 54 yo male (w/o diabetes) and my autonomic dysfunction is associated with severe small fiber neuropathy. The SFN went misdiagnosed for almost a decade (progressive peripheral polyneuropathy) until one day I passed out while stepping out of my car. The neurogenic orthostatic hypotension evolved somewhat slowly. Five years later my average BP is 100/65. On bad days (2-3 days / week) it drops to as low as 75/50 and stays there for upto 24 hours. For the nOH I currently take Fludrocortisone, Midodrine and Mestinon. Even with all of these drugs in my system, last month I past out face first into a glass cocktail cart landing me in the hospital.

The nOH is certainly the most disabling of the symptoms of AN, at least for me. The worst aspect of AN is a constant barrage of new symptoms in any given month. I have lost count of them all. However, last month my pulmonologist explained to me that my severe obstructive sleep apnea has progressed to include central apneas. The same week, my neurologist concluded that my SFN and AN was merely a preamble to the true star performer; Multiple System Atrophy. FINALLY!!! A condition that explains the torture of the last 10 years of my life.

Sorry if I sound rather bleak. I do not intend for this to be the primary focus of my posting. I merely want to share with you that I completely understand what you are going through. I would not wish it upon my worst enemy.

What I have learned over the past 5 years since being diagnosed with nOH, is that most doctors have no clue how to help you other than throwing more and more drugs your way. What has lessened my symptoms more than any of the pharmaceuticals is diet. While I do not have diabetes, I have discovered via trial and error that my nOH is exacerbated by higher than average blood glucose levels. I now have eggs for breakfast bypassing the carb heavy meal that began most of my days.

If you have not yet visited one of the few 'Autonomic Dysfunction' clinics, I strongly recommend that you do so. I live just north of you in the Las Vegas area. While I like both my neurologist and my cardiologist, I am better read in this subject matter than either of them. I imagine that just comes with any rare condition. And yes, what you have is a fairly rare condition. I hope it has not progressed to the point where you need to file for disability. Trust me, they do not know how to deal with your condition. I know this because I am 2 years into a federal lawsuit.

I hope you find a specialist that can provide you with some comfort. Be well.

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