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Finding The Right Physicians


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Hi Everyone;

I know I haven't been visiting this forum like I used. I have found ways to feel better and have been more active, but I do return from time to time to see if there is anything new in the way of Dysautonomia treatments or if anyone has tried something new that truly works. I am also fortunate to have a physician who is very supportive.

I have been reading several recent forum threads. With all due respect and not wanting to offended anyone, I thought I would write this to those of you who may feel extremely discouraged after seeing a doctor who may NOT be sensitive or know all about Dysautonomia or POTS. I am sorry to be so harsh in saying this, but there has been alot of doctor bashing within some of the threads in this forum. Doctor's names, of course, have not been mentioned, but the negative feel towards the medical profession is very obvious. So I felt that I had to write to say that when a "new comer" signs into the forum for information to their newly diagnosed dysautonomia, they desperately need to see POSITIVE information to help them deal with their symptoms. When they read disdainful comments about physicians who are not well informed about dysautonomia it could make them feel discouraged and hopeless in finding their own physician and treatment. And by no means should people newly diagnosed with dysautonomia self treat themselves without the guidance of a physician.

I, myself, have experienced doctors that were so insensitive that I wanted to scream. I had bad experiences in the ER as well as with doctors I wanted as my primary care physician. They didn't have much information about dysautonomia and only wanted to treat the symptoms and not get to the core of the problem. After faithful searching and some suggestions from some great people at this site, I put all my resources together and found the help I needed.

For those of you who are looking for a doctor or those having a hard time finding one who is familiar with Dysautonomia and POTS, please don't be discouraged. There are doctors out there knowledgable about this syndrome. If I were looking for a knowledgable doctor I would pool some resourches. These resourches would include going to the home page of this dinet web site (at the top of this page). There is a listing of doctors, throughout the US and the world, who are very familiar with Dysautonomia and POTS. Then there is the option of calling the State Medical Association, in the state you live in, and ask for a list of doctors that specialize in the Autonomic Nervous System and its dysfunctions. There are also "Physician Referral Services" at area hospitals. If you do find a doctor that specializes in Dysautonomia and POTS, but is not taking new patients then ask if they can suggest another physician who is seeing new patients and is familiar with this syndrome. There are also successful experiences with certain doctors in forum threads here.

I am not saying that every doctor is great or that anyone is wrong for venting their bad experiences. By all means people looking to the forum for information should be made aware that there are doctors that treat patients with Dysautonomia in a negative manner. But they should also be encouraged not to give up hope in finding one that works well for them. Dysautonomia has many factors and many different symptoms. Each of us diagnosed with it are extremely unique. What works for one may not work for another. One doctor may work miracles for one patient and be extremely disliked by another.

I hope I haven't offended anyone. If I did I whole heartedly apologize. Dysautonomia is not a well know syndrome throughout the medical community. I come to this forum, as I am sure others do too, to find helpful information to help me feel better and to, most of all, learn to cope with my affliction of Dysautonomia. I also feel that any new information that I have can be shared with others to help with their healing. Dwelling on the negative only adds undue stress and anxiety. The most positive thing we can do is to share our good experiences that work with others who are looking for more options. GOOD LUCK TO ALL OF YOU ON YOUR HEALING JOURNEY!!!

KathyP :blink:

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Kathy, I think the words written here on DINET regarding the medical profession represents the unfortunate reality of the collective experience of many patients. Even armed with GREAT information and several lists of physicians from DINET, NDRF, CFIDS good doc list, etc., I have run into difficulties myself.

I believe it is fine for you to offer suggestions on how to make it more likely that you'll find a decent doctor. Additionally, this is also the place where POTS patients share their real life expeirences and ask for help. People are just as free to post their good experiences--there have been several in the past few weeks. Sadly, there are more negative experiences than positive. Many times, people are asking what to do next. Other times, it's purely a vent.

On a positive note, Michelle has created a great brochure geared at physicians to help create an opportunity to educate them with accurate information and perhaps develop some interest. As you may know, most physician education programs do very little coverage of our set of disorders.


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Just putting my two cents in here...

Seems to me the "word" speaks for itself. There are some really good Dr's and researchers out there....when any of us finds a Doc like that we share the info and we ALL rejoice with that news. However, if you feel there is too much Dr Bashing going on here, well, that should be an indication that it's a reflection of the medical community and the lack of care provided.

While I certainly want any newcomers to feel hopeful I don't think sharing our genuine experiences puts a damper on that. In fact, it was VALIDATING to me when I found this site and read people's honest input. It made me realize I was not alone, this was not in my head, I deserved to be treated better etc.

Everyone on this board is extremely supportive and we do try to recommend good Dr's when we can.

Most of us on this board love to share our good experience....it's just we don't always have that many of them. I think people try really hard not to disclose a particular Dr's name and to remind people this was THEIR personal experience.

When someone writes about a negative experience they've had we "rally" around them and offer hope and encouragment to keep hunting for the right Dr for them, to not give up etc.

There are many states that do not have Dr's that know about this. In my state there are NO Dr's who specialize in this and VERY FEW who have even heard of it. I am blessed in that I have been able to travel far and extensively to get answers and help. Many people do not have the resources to do that. But we always try to encourage and offer them hope.

The majority of people here do not "Dwell on the negative" ....we share our experience, our pain and our joys which REDUCE stress, not create it.

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Personnally I have never felt discouraged by other's venting. I prefer to know reality and to know how other people are being treated than to have the illusion that all the doctors are great and that I am the one to get the unlucky number.

Many people do share their progress and their joy in finding a good doctor.

I have always felt supported by Dinet and appreciate the loving, sharing and generosity of the other members.

If I am able to improve my health is is partly because I have this group to support me when I am in a POTS hole or to give me suggestions on where to go next. I hope I am able to do the same for others.

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Guest Finrussak


Im one of the newbies but I have been part of many other support webs due to my lengthy struggles with various things and due to my experience with advocacy. I have even been a moderator. I think its important to have a place to vent and to be honest even if it sounds "negative"....at the same time you can still be hopeful and by sharing what works and not works it can help to share frustrations while maybe just maybe cutting the time it takes to find a workable option.

As far as there being lists of doctors; alas for the entire state of NJ there is not ONE doctor for this or even anyone listed. on some of the lists...and when you travel into PA or NYC there are more incompetents that list themselves as being expert...but when they look at your TTT and declare you to not have dysautonomia just because you did not FAINT, despite the high heart rates and high then DROP in BP....not incompetent??well, if it looks like a duck and walks like a duck....

As for other ways to find doctors...what I did after not being able to find anyone by phoning everyone on the associations lists within 4 hrs driving...( and it was time consuming and DESPERATE) was email and write to everyone I found who had written medical journal articles on the topic and ask them for suggestions. This led to some nice and not so nice answers. However I have to say that even though the DINET and NADF sites arent up to date it was a starting point. For example Dr Max Hilz hasnt been at NYU for a long time and is only here in U.S. rarely and then at a Vet Hospital so if youre not a veteran you CANNOT even see him...he'll lose grant money...but we did speak to him on his cell from Europe!!! and he graciously listed about 6 Drs...all but Dr Grubb were too busy or I didnt fit their protocol, one was strictly peds. and a few NEVER EVEN ANSWERED...one Dr from NJ did care enough to email back that she was a pediatric specialist and only in familial dysautonomia....little help for a very ill 46 yr old ( at the time)

Maybe this is negative but its also FACTUAL. The hopeful part is after 18 months getting in to see Dr Grubb and finally being under good care...and others can too.

So I think its very important to share the "negatives" too...if only to save another NJ-ite from the same hair pulling...

and as far as being negative towards the profession in general...unfortunately it is also the truth. The pharmaceutical companies are more interestde in the net profits; the insurance companies want our premiums but not our claims; the doctors in managed care are trained to be businessmen before healers...without discussing this how can we as consumers change this???

We can be hopeful and helpful with honest sharing of experiences and feelings and

we can also provide suggestions...but we dont have to be wearing rose colored glasses all of the time(my apologies as wwell if I offended anyone- I do not mean to)

And thanks to Michelle for the brochure...it has been a BIG help...too bad we cant make it required reading for ALL resident programs, school counselors, and others!!! That and the latest info on MTBI...now that would be nice!!!

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We have a couple of members currently working to update the physician's list. It is impossible to keep all the information on our website updated 100% of the time...there is just too much information.

I am closing this topic, as I fear it may go in the wrong direction.


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