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.
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).
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.
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.
Did you see anyone in Boston that you would recommend?
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!
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!
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.
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.
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.
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.
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.
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?
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!
39yo nephew dx dyautonomia but no testing yet. Lives in Sacramento. Getting nowhere getting appointment at Stanford as has Kaiser insurance.
Please does anyone in northern Calif get expert care with this disorder and who is the physician?? We are desperate.
dysautonomia???? I've had this condition for years and I still haven't spoken to another human (prefer a woman) to share solutions and pain. Love, partnership
and peace in spite of it all, I am still an activist...donna sheehan
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my 13 yr old daughter was diagnosed with dysautonomia by a cardiologist after a few months with a neurologist. She has been going through so much and her dizziness is quite excessive. She actually has to use hand crutches in order to get around because she is so dizzy. of course she has the headaches, high heart rate, blood pressure, constant flight mode, overly dilated pupils, chest pain, sleeplessness, fatigue, brain fog/forgetfulness....not easy for a 13 yr old. Obviously has been out of school since the dy she woke up dizzy back in Jan. So, she is on a beta blocker, does take some salt supliment (not nearly as much as most the Dr's patients apparently due to her increased heart heart/blood pressure. So I'm wondering if anyone has had any luck at any hospitals in the South East area...SC, or somewhat in that area, or if you could, what would be the best place you would go if you could for treatement? Any help would be appreciated! Thanks!!!!
No doctor has ever diagnosed or educated me. My current Primary Care Physician is ignorant about dysautonmia in general and Neurocardiogenic Syncope (NCS) in particular. So I am self diagnosed and self managed since the medical establishment has been a dead end for me. Thankfully I've been able to educate myself on the internet about these issues. Learning that I am not insane or alone has been a big relief. Understanding that my NCS has triggers and learning to manage them has been most helpful. Otherwise my symptoms can be terrifying, especially while they were unexplained since my earliest childhood. I continue to investigate the link between dysautonomia, depression, and low stomach acid but have given up trying to find professional hope. I need a generalist, not a specialist, since my health issues are clusters not conveniently falling within any specialty. I live in Oregon and am 65. I'd love to share experiences with others.
My sister has diabetes - is now on peritoneal dialysis and has been diagnoised with Automic Neurpopthy. She has been in the hospital for a month because they can't figure out how to regulate so she can go home and function. She gets extremely dizzy and almost passes out. What do we do - they don't seem to know how to treat it. We just keep getting the same answer - it is very difficult to treat and we are trying to figure it out. She lives in Michigan. What do we do from here