find the best doctor to treat autoanoic dysfunctiion

[kitty0604]

Hello I was just diagnosed with autoanomic dysfuncion, neurogenic orthostatic insufficiency, with postural tachycardia and peripheral vasoconstrictive insufficiency.   I was told I could follow up with the Neurology when I went home.    The doctors are not comfortable treating me because my condition is rare and they want me to follow up with Mayo.  I feel awful.  :(    And Mayo is a long trip from Kalamazoo, MI to MN w/a three year old--plus I have no energy.  Can you please help or ask to see where the best doctor that specifically specializes in this disorder.  I really feel low and sick can't sleep.  It's been a horrible experience.    They sent my records from Mayo,  MN and I don't know exactly know what everything means and it seems like all 4 specialist I see don't know either.   I'm at a lost and I really need help.

[saagsjh]

I just read your posting...it has been several years since you wrote it. I was wondering if you can help me. I have been diagnosed with autonomic disorde and a heart condition being affected by my automatic system. I'm supposed to go to the Mayo Clinic and cannot bring myself to do so. It is a long trip from where I live and a lot of money and time will have to go into it. Did you ever go to the mayo Clinic? If so, was it helpful and would you go back again? Any advice or help you can give me would be greatly appreciated. Thank you so much!

[saagsjh]

It has been over 4 years since your post and I was just wondering what you found out about your treatment. I have almost the identical symptoms that you do and I am having problems with my heart. Any help or any advice you can give me would be really helpful. Thank you so much!

[cathyst]

I am in the same boat.  Recently diagnosed with Autonomic Small/Large fiber Neuropathy with motor neuron involvement.  My MS specialist at the University of Miami said that I have to go to Mayo, MN.  It is such a long flight and it will be very difficult, since I cannot sit for more than an hour or so.  We will have to fly first class, so I can recline.  I am desperately trying to find a specialist closer to home, hopefully in Florida.  Unfortunately, Mayo is out of network for my insurance, as is Vanderbilt.  This is so frustrating and I really need answers.  I would hate to spend thousands to go to Mayo, only to leave with no help.  Also, I have cardiac issues, aside from the autonomic issues, and my cardiologist said that he cannot help me with the autonomic symptoms.  Where do I turn?  I know this is serious.

Thank you for any help.  
Cathy

[Kim282]

My sister was diagnosed with POTS at Mayo in MN at the end of June. Her primary symptom is constant nausea that is increasing in intensity. She has a feeding tube, is recliner/bed bound and is unable to work. Do you know of anyone with this condition and their treatment regimen? We are trying to get into Vanderbilt as well as an MD in Florida and we are active members of DINET. There are very few avenues to persue. Any help would be greatly appreciated. We are desperate for answers. Thanks, Kim

[Heiferly]

It does sound like they covered all their bases with your diagnosis, perhaps a bit redundantly (others want to chime in here)??  By "postural tachycardia" I'm guessing they mean POTS, which often comes with the symptoms of "vasoconstrictive insufficiency"--though I've never heard it separately diagnosed, many POTS patients are on vasoconstrictor medications to help with this.  The same goes for patients with neurocardiogenic syncope (also called vasovagal syncope), which is pretty regularly diagnosed on top of POTS.  Orthostatic intolerance (I've never heard it called orthostatic insufficiency before??) is a general way of saying that the body does not make the proper adjustments (blood pressure, vascular constriction, heart rate) to an upright posture.  And autonomic dysfunction is the umbrella term that encompasses POTS, vasovagal/neurocardiogenic syncope, and MANY other forms of related disorders.  

It is definitely a vocabulary unto itself, but fortunately there are excellent websites that can help you learn what it all means and what is going on with your body.  I recommend NDRF.org, DINET.org, and imazebra.net . . . about.com also has quite a few articles on dysautonomia under heart disease.  

There are very few doctors that specialize JUST in these disorders.  There are dysautonomia clinics at Mayo Rochester, Johns Hopkins (Baltimore), and Vanderbuilt (Nashville).  There is a specialist, Dr. Blair Grubb, in Toledo, OH.  There may be others--anyone else want to chime in?  Those are the only ones of which I've heard.  On the other hand, some patients are able to be treated by knowledgeable doctors that don't specialize in this per se.  You may have better luck following up with cardiology than neurology.

Feel free to send me a message if you have more questions.  I hope I can guide you to the information you need.