Cardiologist Or Neurologist? Which One Do You Use?

[2manyfurkids]

Hi,

I'm about at the end of my rope. I thought today was going to be the big day and I was finally going to get a diagnosis of POTS. I saw a cardio at a teaching hospital which I figured should be the best. I had a tilt test a few weeks ago. I don't think my cardio knows much about POTS. I dragged my husband along thinking we were finally going to get some real info. Like someone said on this forum, the Tilt table test depends all on who interprets it. Basically, I think he thinks it is not a heart problem so he is referring me to a neuro. Because I asked! He thinks it is a false positive because I had to have the injection of isopen???(adrenaline)to cause me to faint and my BP remained pretty steady whole time. But, my HR wentup to 120 and suddenly dropped to 70. It says right on DINET info page that some doctors don't think you have to have orthostatic hypotension to have POTS. At least he put me on a low dose of BB(Toperul?). I begged him to please let me go back on the Florinef and he said he thinks the BB alone should help. He wants me to stay on it for a few weeks so he can see if it alone helps. If not, I can go back on Florinef too.

Also, after the TTT I had gotten blood work drawn for the endo. Aldosterone and renin activity. I asked the lab whether the fact that I just had the tt test with injection of adrenaline would effect the results.

They said no. So, I researched it tonight on the net when my aldosterone came back high, and the doc thought it was going to be low. Turns out, the aldosterone should go up alot after the TTT. And stays up for 45 minutes after! Scary!!! I suspected it might alter the results, why didn't the lab? Also researched alot on TTT and giving injection isn't considered a false positive as long as you have brachycardia, drop in BP, or both. If you put in search engine HUT false positive, there's a bunch!

Sorry for the venting! Any suggestions on docs in my area? I'm not sure what to do next, except give up and accept maybe there IS nothing wrong with me.

[Dawg Tired]

Tough question...... I know there are a few neuros that treat dysautonomia, but mostly electrophysiologists do this.

In my case, a pulmonologist found my problem - the neuro I was sent to said flat out that I was nuts!

I think on the main website here is a list of doctors - I don't know where you live but maybe you could at least talk to the office of one of them and see if you can get a recommendation.

[Jacquie802]

Hi,

I see a cardio, neuro, and EP for my POTS....I also follow up with my PCP every 3 months.

[AJVDK]

I am treated together with my familt doctor and my EP doctor. They call and talk to each other, mostly I see my family doctor on a weelky to biweekly for procrit shots, and adjustment in treatment with the meds.

[jenwclark]

I was finally diagnosed by a neurologist. The cardiologist I saw didn't even order a TTT. Your test sounds pretty similar to mine. My blood pressure was normal until they added the drug challenge, but my heart rate was over 130 for half an hour. The doctor supervising the test actually diagnosed me with vasovagal syncope, rather than POTS. I'm not really sure why, because my neurologist and the techs running the test thought it was a clear case of POTS. Just another illustration that it's important who reads the results.

I think the doctor's attitude is more important than his specialty. I hope someone can direct you to a good one in your area. If not, maybe you could take your TTT results to an out of town specialist.

Hang in there. We're pulling for you.

Spike

[2manyfurkids]

Thank you for your support. The nurse doing the test also said I have vasovagal syncope or NCS. Glad to see I'm not alone. Am being referred to a neuro on the physician list from this site. Hopefully, that will provide answers. Thanks everyone, Karen

[dawn]

I saw a POTS specialist at Marshfield Clinic over a year ago and had a TTT. He was very nice. At the time he said he was moving to Milwaukee. I am pretty sure his name was Dr. Heimer.

Good Luck

Dawn

PS He is a neurologist

[Lulu]

Hi,

i would agree w/ spike that it is often more the doctor than their "department." i was initially dxd w/NCS by a cardio who started me on toprol, which worked well for some time.

after a few years, symptoms worsened, i was dxd by an EP w/ POTS. i am lucky to have a great PCP who is on board w/learning new things and working w/my EP, who is 2 hrs away.

the neuro i was referred to said he didn't think it was possible for me to be passing out as many times a day as i "claimed to be." yeah, right. and in b/w getting sick & getting a solid dx, there were many wrong dxs, let downs, bad meds, frustrations...

i know how frustrating it is to go to a doc w/ the expectation of "finally!" and then there's a big let down and you don't know what to do. i would guess a lot of us have been there. best of luck to you! i hope you find some answers...

take care,

lulu

[ellepee]

I see neurologists. I saw a cardiologist once which was a waste of my time.

[lthomas521]

The best doctor I've ever had for POTS was a nephrologist.

[yogini]

Sorry you're having such a rough time. The best kind of doctor to see is usually one who has experience in treating dysautonomia. This could be a cardiologist, electrophysiologist or neurologist. There is a good list on the DINET main page. If there isn't a good POTS doctor near you, then you could try for a GP or any other doctor that listens and is willing to learn. You may also want to search the forum, b/c this question has come up a lot before.

[Sunfish]

as others have said it depends a lot more on the individual doc than on his/her particular specialty. it's true that a cardio EP or a neuro are most likely to be "in the know" with autonomic disorders but there are others as well...internists, family practitioners, endocrinologists, pharmacologists, etc.

i was diagnosed by my PCP & have seen autonomic specialists over the years who are cardio EPs, neuros, & pharmacologists.

i'm sorry you're having a rough time finding a good doc that "gets it"; unfortunately you're not alone in that regard.

melissa

[Jan]

Pots is a neurological problem so it would make sense that is who to see. Neurologists staff the clinic at the Mayo that specializes in POTS. Unfortunately, I don't think many neurologists know much about POTS.

When I saw a neurologist he said he couldn't figure out what was wrong with me. He said he knew of some really rare disorders that cause BP to drop and HR to rise but he was sure I didn't have one of those and not to come back to him. Sure wish I had asked him them what those rare disorders were, since I had one.

The cardiologist, bless his heart, was reading a medical book about POTS during my tilt table test and said the book said to prescribe Florinef. He said POTS wasn't really a cardiology problem but he would treat me if I wanted him to. I told him I had an appiontment at the Mayo and he said he was really glad since he knew nothing. He was visably relieved to be rid of me. I can't blame him.

Now I have my Internist treat me. He looks things up and checks out ideas I have.

I would go for anyone who seems interested and willing to research and try things that might help. They could be a tree surgeon and I would go to them if they were willing to help.

[calypso]

Just wanted to say I'd stick to Milwaukee or Marshfield Clinic, or even go to Mayo. I live near Madison, and just one of the eight doctors I saw at UW -- which is supposed to be a major medical center -- had ever diagnosed POTS. My cardio knew of it but didn't think it was common or a "real" diagnosis, because he thinks syndrome labels are inaccurate and don't explain the problem. And that cardio is ranked in the top three in the city.

My neuro diagnosed me, and he said I was the second-ever case he'd diagnosed. I think he's in his late 30s and been practicing for nearly 12 years.

Good luck.

Amy