Dysautonomia (Autonomic Dysfunction) Community
Where have you gone for diagnosis/treatment?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Where have you gone for diagnosis/treatment?

I know many of us agonize over the decision of whether to rely on local doctors, travel perhaps hundreds upon hundreds of miles to get to one of the few dedicated syncope/autonomic clinics (such as Mayo, Cleveland Clinic, Vanderbilt...), or perhaps seek a middle-ground by relying on specialists at a big-name university teaching hospital that nonetheless lacks dedicated autonomic care.  How many of us have started locally, only to progress to specialists at a teaching hospital, and perhaps even eventually be referred on up the line?  For those just starting out this process, I think it would be telling to see where we "old hats" finally ended up.  So regardless of the process you took along the way, please select the most specialized/advanced care you have sought out for testing and/or treatment.  And by all means, leave comments and let us know what has worked for you, what hasn't, and what your hopes for future care are!

Note:  "Renowned specialist" in this context is a doctor who works outside one of the major teaching hospital autonomic clinics, such that he is essentially the sole/main autonomic/syncope specialist at his hospital/office rather than working within the context of a dedicated department with several doctors all specializing in these fields and a host of technicians operating all of the sophisticated testing equipment.  A good litmus test is that such a doctor has likely published at minimum 5 peer-reviewed journal articles in this field of research.  Examples off the top of my head would be Dr. Blair Grubb and possibly Dr. Julian Stewart, unless his department is larger than I imagine it from what information is available online.
10%
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Non-teaching hospital; doctors/specialists without privileges at a major teaching hospital.
40%
 (4) 
Teaching hospital (without autonomic dept)
20%
 (2) 
Renowned specialist
30%
 (3) 
Teaching hospital syncope/autonomic department
10 Members voted
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14 Comments Post a Comment
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881165_tn?1265988188
I started at a major teaching hospital, got nowhere; saw a renowned specialist, got a LITTLE help; ended up at Cleveland Clinic, where they figured out I have peripheral autonomic neuropathy from Sjogren's.  12.5 years of the first two, 6 months at Cleveland Clinic.
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612876_tn?1355518095
I started local, got nowhere; have spent about 2.5 years at a nationally-ranked University teaching hospital, got diagnosed and have shuffled around with the standard treatments; got referred to a renowned specialist but the wait was too long for me; now going to Cleveland Clinic for testing (will continue to manage care locally at University teaching hospital).

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768467_tn?1260232958
After five years with many doctors, that did not know how to help,in fact made me much sicker, a renowned doctor from AL made my life worth living once again. I saw him for 19 years, and now waiting for an appointment with Dr.G.
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492869_tn?1285022533
It was quite a long time ago, so it's difficult to remember all of the details.  My parents started off by taking me to local Cardiologists and Neurologists.  I was misdiagnosed with several times, before ending up at the teaching hospital where I was finally diagnosed.  (I'm guessing a couple of years...)

Since then I've been to two or three more teaching hospitals on the east coast, a couple of well known hospitals in Boston, (Brigham And Women's, Beth Israel, etc.), and several other random Neurologists and Cardiologists in the area.

At the moment, I see local doctors and use the Internet to keep up-to-date on potential treatments.
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Did you see anyone in Boston that you would recommend?  

Thanks.

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I was diagnosed with Fibromyalgia in 1998 by local internist and rheumatologist and had crappy treatment for a few years.  From 2001 until 2008 I saw a renowned Chronic Fatigue/Fibromyalgia specialist (David Bell, MD), who diagnosed me also with CFS and POTS.   Dr. Bell retired in December.  He was about 3 hours from me.

Anyway, I'm considering:

Blair Grubb, MD (10 hours away)
Vanderbilt  ( a zillion hours away!)
Cleveland Clinic (7-8 hours away)
Brigham and Women's ?? (5-6 hours away with free place to stay there with family)

I'm still researching options for where to go next.  I need to get myself on a waiting list.  Can anyone recommend specific doctors at any of the above places?   I need a more thorough evaluation for changes in my symptoms.  In addition to my usual dizziness, weakness, etc, I  have had four episodes in the last year of severe GI problems and almost passing out at the same time, very short of breath too at those times with GI symptoms.  Weird.  I have never had that severe OI with GI pattern before. Drs. here can't figure it out.

I can't drive more than about 45 minutes from home.  Hubby can take me but we also have to figure out to do with our young kids. It gets expensive and complicated but I really want to see someone good!  I don't want to go somewhere that will be a waste of time etc.

I'd appreciate any help.  Thanks.  Sorry for the redundancy with my earlier post. Guess I had a lot to say!
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492869_tn?1285022533
Unfortunately, I haven't found anyone "spectacular" in the Boston area yet, but that doesn't mean you won't.  I'll let you know if my search turns up anyone in the near future.  Good luck!
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881165_tn?1265988188
Brigham and Women's sounds like the best for you if anyone in this forum knows a doctor there.

I've been to Dr. G and Cleveland Clinic.  Dr. G is a great doctor and fantastic man, but has some major life issues to deal with himself right now.  Not only did this mean I waited a long time to get in, but his staff also had a really difficult time following up in a timely, appropriate manner and addressing major medical problems that I had.  I decided to switch to Cleveland Clinic, where my care has been excellent.  It took about two weeks to get in last year, although I heard the wait is longer now.Feel free to email me if you would like more details.
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875426_tn?1325532016
I was diagnosed with P.O.T.S. back in 2004, at Kaiser, Sunset in CA.  They are a teaching hospital, but I don't think they were teaching in the electrophysiology department.  I live in TN now, but Vanderbilt is hours away and I don't really think they could help my life quality get any better.  I also suffer from GERD, migraines, IC, etc..  I recently went to a cardiologist here in TN as well as a endocrinologist.  My norepinephrine level one of the times was 515 (normal up to 399).  My heart raced as high as 152 during a 48 hour holter monitor.  The surprise was that my heart was racing higher and more often than I thought on the hour by hour.  I thought my main problems were hours of sleep, after certain meals, and after a shower or bath.
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612876_tn?1355518095
The only Dr. I know off the top of my head at Brigham and Women's is Dr. Marianna Castells, and she's the go-to woman for suspected cases of mastocytosis or MCAD (mast cell activation disorder), not a POTS or dysautonomia specialist.  Does someone else have a name of a dysautonomia doctor there?  

As for Cleveland Clinic, Dr. Jaeger is the director of the syncope center and Dr. Fouad is the head of the hemodynamic and neuroregulation lab.  Those are the two names that I hear most often out of the syncope/autonomic clinic.  

http://my.clevelandclinic.org/staff_directory/1/Staff_620.aspx
http://my.clevelandclinic.org/staff_directory/1/Staff_637.aspx

Vanderbilt has the advantage of ample opportunities to participate in research.  I don't know of any specific names there, though.  :-/

Sorry I can't be more helpful.  Hopefully someone else can fill in some more blanks here.  

I will say that having syncope or pre-syncopal symptoms during an episode of GI problems can be a vasovagal response.  You can send me a direct message if you want to talk more about it discreetly.  

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950452_tn?1246073628
I have been diagnosed with Fibromyalgia and lupus, but lately my research has shown that all fibro symptoms are actually caused bu dysautonomia. I hope doctors learn this and change the name of the disease. Anyway, where do I start?> What type of Dr. treats problems with the autonomic nervous system? A neurologist? Internist? Or do we seek out specific doctors with that knowledge, no matter their specialty? I am in Canada where its almost impossible to get to a specialist, and it could take years to see all necessary people and get all tests, so I'd like to start ASAP searching for help. In the meantime I am dealing with some natural supplements to help the symptoms. Thanks for any answers.
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612876_tn?1355518095
You are correct that specialists who treat dysautonomia are generally either cardiologists or neurologists.  Personally, if I had to hedge my bets, I'd go for a cardiologist.  But more important than specialty is the doctor's experience/knowledge re: dysautonomia.  Unfortunately I'm not familiar with the Canadian healthcare system, so I don't know how to advise you on how to find a good specialist there.  I will let you know if I can find out more information on that for you.

What tests are you thinking you'll be needing?  What symptoms of dysautonomia do you have?  What supplements are you taking?

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Avatar_f_tn
I see your last posting was in 2009, and you had not found anyone spectacular in the Boston area. Has anything changed? My 28 year old daughter has just relocated to the Boston area and is looking for a neurologist to treat her autonomic neuropathy with bi-weekly treatments of IV/IG. I know about Harvard (Beth Isreal), but this is not an option since she cannot get an appointment untl January 2013. If she does not get her treatments she cannot function. She has relocated from the Maryland area to take a new job and will have Blue Cross insurance in 30 days. Until then she has to return to Md every two weeks under her cobre policy for treatment. My email is ***@**** or phone 281-480-8276
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Avatar_m_tn
Hey daisylamb can you tell me the name of the doctor you went to or where he works out of in Alabama? I was diagnosed several years ago (10+) at the Cleveland Clinic. My symptoms are getting worse and I believe I may have built up a tolerance to my beta blocker but I am getting shuffled from doctor to doctor because no one knows how to deal with the disorder and is afraid to do anything. They keep trying to send me to someone they "think" may deal with it, but when I call for an appointment they keep telling me ,"Oh no, we don't deal with that." UGH!
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