Names of Doctors in South Florida

[ParrotPal]

Hello.  Am new to medhelp.  Is there anyone that can help with the names of physicians that can treat, diagnose, or help in any way whatsoever with this in adults?

Thanks.

[vbc2000]

Hi There,
I'm on a NCS group over on Yahoo too and remembered your post.  Just saw this there...hope it helps.
Stephanie

>>>Thanks to Michelle I found a doctor who is a cardiologist, EP who is really into POT/NCS. He is in north Central FL and has an office in the Villages and Ocala. He is wonderful. He found out that my pacemaker leads were put in backwords and so much was done wrong. Basically, he has given me my life back! He is awesome Dr. Reiders. He is from UCLA. I wll forever be thankful for this site and Michelle for the help.

[ParrotPal]

Yes, LaLa4.  I agree with you.  Drs. have a few minutes of face time and put patients into the broadest category and treat.  Some people get a little better, like me.  So the doc just continues to treat me within the same scope of that IST dx.  He's changed my meds around 4 time in 4 weeks now and each time, but the problem persists.  However, he thinks he is on the right track because the same med (beta blocker), I believe, can be used for POTS.  My hear rate varied between 48 and 100 today in a small window of time without any exertion other than standing up, while the BP was "relatively" stable.  So since he changed the meds around again, I called about this... and now he says to see electro physiologist in his office.  I am going to the Mayo next Wednesday, so I'll wait.  The one thing that he had done for me, but only as a bonus, is he has helped the migraine situation tremendously because of the beta blocker for the IST dx.  So, the docs think they are making you better and, I have now noticed,  they write a note saying patient showing improvement.  In my book, that is way different than feeling well.  I strongly encourage people to be very careful how to let their doc know if they are feeling better, i.e. saying - I still don't feel well, but have had some mild/moderate/extreme/intermittent/etc. relief.  Otherwise they write it down like you are better.  

[LaLa4]

No no no no, POTS is definitely not the same thing as IST! I had one dr. tell me that he thought I had IST and wanted to do an ablation procedure on my heart (which is a major deal, I think) which would have been completely unnecessary and dangerous. I've read that patients that have POTS and have an ablation can actually end up worse off.  The symptoms of IST resemble those of POTS.  Have you been specifically diagnosed with POTS or just IST? You definitely need to find someone who knows the difference.  You are so right that us laypeople do know more than most of our doctors about this... how sad is that??  But that being the point,  you can't let someone put you at risk for improper treatment and diagnosis because they are unwilling to learn and research something new.  As a rule, dr.s look for the easiest explanation, because that's generally the answer.  But when you know you don't fit into that category of a neatly packaged clear diagnosis you need to be your own advocate, and advocate hard!!

[ParrotPal]

So now I'm starting to wonder about my dx.  Cardio had dx of IST -inappropriate sinus tachycardia.  I was there again last week and asked him difference between IST AND POTS, he looked me in eyes and said they are the same thing.  Never did tilt table or valsalva.  Only tests he's done are EKGs and Echocardiogram.  I posted a link in a new threat about an excellent article that described POTS like I haven't seen in any one article anywhere else.  It is written by a doctor for doctors, but it is very easy to follow for us laypeople, who, by the way, seem to know more than our doctors now.  

[LaLa4]

Parrot,  I know exactly how you feel, I want as many answers or definitive diagnoses for everything that's going on with me as possible.  I don't know exactly what info will help me as far as treatment, but I figure the more answers I have the better chance I have of figuring out how to best treat it. And I'd love to find out if something specific is causing it... there's a lot of chicken or the egg with this stuff as far as symptoms and everything being interrelated.  
I gave Dr. Cheshire my medical info and test results from my cardio and he actually just repeated the tilt test and valsalva maneuver to "confirm" my POTS diagnosis.  He didn't do any other testing/scans or anything at all, that was it.  At CC in Ohio they did hemodynamics testing where I found out that I have hyperkinetic circulation, another test (not sure which one) showing I have hypersensitivity to adrenaline, and she drew a lot of blood (still waiting for those results).  She also did a heart rate variability test, an echo and a couple other tests that Heiferly mentioned.  Point being, I don't know if all this will actually help me but with all this extra info I feel like I'm one step closer.  I felt like Dr. Fouad (my CC in Ohio dr.) really tried to cover all her bases and I've never experienced that with any other doctor (including Cheshire).
I would definitely specifically ask for all the tests Heiferly wrote above before you get up there so he's clear on what you want.  And if you ask before you go you'll also know what their facility's capabilities are ahead of time.
Good luck, I hope you get some more answers!

[ParrotPal]

Lala,  I hope I get more out of my appt. with Dr. Cheshire than you did.  So did you go there, see him and then was sent home?  No blood tests, or scans or other tests at all?  Did you bring or supply him with results of any extensive testing you already had?  

Here's the thing, other than diagnosing a patient, I wonder what else can be done?  If dysautonomia can be treated only based on the symptoms and separate systems that are flaring up, what else can be done.   My goal is to get a handle on diagnosis.  Since I don't have any docs in S. Florida that can make the diagnosis, let alone even know what it is, my goal is to at least find out what Dr. Cheshire says - i.e. to rule it in or rule it out.  At least then I will know what is going on for future.  

I am still going to pursue my physician's friend's suggestion to see if something is going on with hormone imbalances (can happen to men and women), or some other toxicity.  Because, the lingering question is - when one does have dysautonomia, what causes it?  I have read everything from A-V, anxiety and stress to virus and who knows what else.  

BTW, when I read about vitamin D deficiency on medhelp and others, many of the dysauto symptoms are the same and there are parallels.  I was dx'd with low D two weeks ago.  Which comes first, who knows?  

It is really confusing.