How did you all find doctors?

[Weary]

Been reading everyone's posts, and curious what routes people took to find docs who treat their dysuatomia. Many of you seem to be hooked in to one or more pretty d*** useful docs. Did you use the docs recoomnded on this list? did you go to a specialized center? just got lucky that your pre existing docs were knowlegable?

I'm not having much luck and am weighing my options. Both an EP cardio and a regular cardio say they don't treat autodysfunction, but the regular cardio willing to give me any standard big pharma med i wanted pretty much (dragging my feet on trying labeletol because i do so bacly with meds and no one will be here to pick up the pieces if i have a bad reaction). Tried a new primary doc - and she was awful , so am not going to keep her. Basically she said, i don't know anything about dysautonomia but your bp is out of control, so let's use mega doses of beta blockers. all my attempts to tell her that mega doses of anything are a death sentance for me just got quizzical looks. I may try anyway, but i want a doc who at least says, lets try to get it lower and then we will have the luxury of dong some autonomic tests etc - but nope, can't get that.  oh and the endo ws only interested in ruling out pheo, and she wasn't even thorough at that, and the neuro has zero interest in it, despite being quite intellogent (not all of my docs are intelligent). (and don't even get me started on the looks that mast cell disorders gets). Especially if its not garden variety pots, it seems especially problematic to find someone willing to work on it with a patient. Each visit so taxing, I need to give this some thought before i gear up to try again. (only my retina guy is outstanding and he'll be testing me soon to see if any of my eye vessels have been damaged by the attacks i get)

so back to wondering how did all of you find your docs that youre happy with? 

 

EDIT: I should add I especially need help pronto with cardiac autonomic dysfunction

 

Edited June 6, 2018 by Weary

[Guest KiminOrlando]

Truly for me the answer to your question is dumb luck. I saw a lot of doctors who dismissed me as lazy or in need of psychiatric care before I stumbled in to my current situation. I drive 6 1/2 hours for a GREAT doctor. I live in Florida. My doctors are in South Carolina.

[Pistol]

Oh - the story you tell sounds so darn typical!!! -- In my case I was very lucky since I have an awesome PCP who worked with me. I saw 5 cardiologists at 2 major hospitals, only the last one recognized POTS but admitted that he did not know how to treat it. I asked for referral to specialist out-of-state early on ( 1 year waiting list ) and he diagnosed me right away and took over. I can only recommend to look out-of-state ( if your insurance allows it ) or contact major hospitals and demand to see physician who accepts dysautonomia patients. 

[p8d]

I was dumb luck too.  I thought I had CFS, read a book on it and it suggested ANS dysfunction.  I googled, found a specialist in my city, 6 month wait list, called my existing neurologist (migraines) who told me there was an autonomic dysfunction specialist in his group and it was only a three month wait.  She diagnosed me 5 minutes, confirmed a week later on a TTT and other tests.  Definitely use the list on this site.  I am extremely lucky that there are two in my city but many people have to travel.  Where are you?

[WinterSown]

My primary sent me to a cardiologist, who sent me to the EP and Neuro.  I had a really bad week and called for an appointment, I'm seeing my EP tomorrow. #win

 

 

[StayAtHomeMom]

My 2 nd cardiologist tried to send me to an EP cardiologist who said no she needs to see a specialist. He recommended the only one in my state. A neurologist 3 hours away. Turned out to be the greatest thing. 

[Guest ANCY]

I went through several neurologist until I found one who took me seriously and wanted to help. He then recommended a cardio. GI and others i asked for recommendations. 

[Rene]

On 6/6/2018 at 7:44 PM, KiminOrlando said:

Truly for me the answer to your question is dumb luck. I saw a lot of doctors who dismissed me as lazy or in need of psychiatric care before I stumbled in to my current situation. I drive 6 1/2 hours for a GREAT doctor. I live in Florida. My doctors are in South Carolina.

Can you share who you see in SC? I am in SC and not able to find open minded care for my teen daughter. She keeps being told the same things by cardio and neuro - psychiatric. It is so heartbreaking. 

[Guest KiminOrlando]

I go to MUSC in Charleston. Unfortunately my POTS doctor is no longer seeing patients and is in the process of hiring a new doc. He is going in to research and will be overseeing their new autonomic clinic. I don't think they are taking new patients at this time. I see him for the last time next month and will hopefully get an update with better news.

[WinterSown]

My primary sent me to his cardiologist who introduced me to the EP and the Neuro.  All three are under the same roof at the same cardiovascular center and they're fifteen minutes away.  I have a great team of doctors caring for me. They listen and they help make me better. 

 

 

[Pistol]

@Rene - there are no autonomic specialists in my state so I have to travel to see mine. I also went to Vanderbilt before, also a long trip for me. Most of us have to  travel out-of-state, unfortunately. I am sorry your daughter is being treated like that. I personally would not wait to make an appointment with a specialized autonomic clinic or physician. When I first got ill I realized that cardiologists at my university hospital did not know how to treat this I right away went to a specialist and got diagnosed within 2 years ( 6 years is average ). Unfortunately most autonomic specialists have a waiting list - so don't delay!!!! Best of luck!!!!