How to get an official diagnosis?

[Clairefmartin]

Hi everyone,

I keep reading all of your diagnosis at the bottom of your posts, and I had a question about getting tested for all those things. Did you see one doctor who specialized in dysautonomia, and if so, do you have suggestions as to where I should go? I live in Virginia, but am willing to travel. I am so frustated with the specialists I've seen, and my poor PCP admits he doesn't know what to do with me, so we basically picked the closest doctor from a list of centers for autonomic studies. I am scheduled at UVA with Dr. Phillips, and he has me scheduled for an EMG, but I think I need a TTT instead, or maybe both.

I need to get tested for movement related near fainting (I have only blacked out once from standing up, but get lightheaded often), heart rate increases when I stand, GI problems, and these weird tremors and shaking sensations when I get tired or am trying to fall asleep, and a whole bunch of other minor things, like rhaynodes (I spelled that wrong!) in my hands.

Just wondering what tests you guys had doen for your diagnosis, and if you had suggestions as to doctors.

Thanks!

[Ernie]

HI,

You can take a look at the link. It gives a list and comments about the different tests.

http://www.dinet.org/how_is_pots_detected.htm

[dianaD]

Boy, it sure sounds like POTS! I saw so many docs -- even one listed on the POTS list, who is supposed to specialize in POTS, who STILL missed the diagnosis. I think I threw him off because I have such a hard time breathing, and the tachycardia is present, but not ridiculous.

I just got tired of the doctor-go-round, and went to Mayo Clinic. Praise God, the pulmonologist recognized it within about 20 minutes and I was on a tilt table the next morning. My heart rate went up 50 beats in 10 minutes and the autonomic specialist saw me the next day, giving me the diagnosis of POTS. He also did a sweat test and a catacholamine test (blood test lying down and after standing) to confirm that it was the hyperadrenergic form.

So, I guess it depends how easy it is for you to travel, and how tired you are of trying doctors, what your insurance covers and how sick you are. I had just reached my limit mentally and went where I thought I could get a diagnosis that everyone would respect (including my professional disability insurance company).

Vanderbilt is a decent place to go for a diagnosis, and you would probably qualify as a research patient, meaning you can stay with them, and everything is PAID for., Yippee.

Have you checked out the list of docs on this web site?

Please keep us posted, and don't hesitate to ask any questions. Some of us here are pretty "seasoned" and are now big know-it-alls! Ha.

Good luck to you!

[briarrose]

Claire

Welcome aboard, sounds like you found the right place

The level of testing you get done depends on symptoms, your docs & how much they know. There is a good recommended page here regarding that info.

Here is the true definition of Raynaud's - http://www.niams.nih.gov/hi/topics/raynaud/ar125fs.htm

My primary doctors did most of the appropriate tests and even gave me a diagnosis. I went to Dr. Grubb for treatment because they weren't doing anything for me here.

Also if you like to do research, on the top of the Forum page Nina (mighty mouse) has pinned a topic called Frequently asked questions -

http://dinet.ipbhost.com/index.php?showforum=1

Look for this too - http://www.potsplace.com/

POTS Place

POTS Overview

Symptoms

Mechanisms

Causes

Detection

What Helps

What to Avoid

Myths

Research

Links

hope this helps a little.

steph

[lthomas521]

Helpful hint:

Before you go in for an evaluation, stop whatever conservative measures that you are using to try to counteract your symptoms. For example, I stopped salt and water loading and ate and drank like a normal person for a couple of days before I went in to get evaluated at Mt. Sinai. I took my pressure stockings off before I got on the tilt table. So my results were very abnormal at my baseline assessment. If you go in loaded to the gills with saltwater and licorice tea and wearing pressure stockings, you might look deceptively normal. Ask your regular doctor if you can go off your prescription medications (e.g., beta blocker) before you go in for an assessment at a referral center. The doctors there need to see how abnormal you are, not how well you are doing under your current regimen.

[Poohbear]

You may want to do a search on this site for UVA or University of Virginia. If you live in VA Beach that may be your best bet.

They have specialists there that diagnose and treat for these disorders. There are some people on this board who got a lot of help from them. It's also one of the places where Dr. Grubb first trained.

Good luck

[Clairefmartin]

Thanks for all the help - luckily I am off all meds except for as needed Ativan, so my tests should come out as abnormal as they are capable of. I am now scheduled for a local TTT, and set up to go to UVA to see Dr. Phillips who will read the results. Hopefully he will know based on my syptoms what else to test for, there are so many (symptoms and tests!). I think I'm going to apply for Vanderbuilt as well, though I went to their website and wasn't sure if they actually treat you or they just use you for their own tests.

Anyways- thanks for the feeback

[bttrflyamby1981]

Thanks Claire,

I was wondering the same thing for myself.

The doctor I had, tried to find out what was going on but admitted that he didn't know much about pots.

All the tests I have had I was on meds. so don't know if they were right. The doctor did say he thought it was pots, but said it could be hard to diagnose??

The only test I had done that showed anything was the holter moniter. My heart rate would be 132 for hours then all of a sudden go back to normal. The diary that I kept showed this wile I was standing.

Other tests I had I had to stop because of near fainting, and my blood pressure going too low.

(I origanally went to the doctor because everytime I would exersize I would become weak and dizzy.

Even takeing care of my small children could bring a dizzy spell on.)

I started haveing these symptomes while pregnant with my youngest and thought it was the pregnancy.

Then after I had him I thought it was because I breast fed him. 14 months later I stopped breast feeding him and I was still weak all the time.

Sorry I keep jumping around, I'm having a bad day and my mind is wondering.

Anyway, I have seen two doctors who have said it was pots but never helped me understand what it means for me. The info I have I got from my Pharm. (she refused to fill a persciption for safety reasons) She was curious herself and got the info. for me.

Now I'm playing a waiting game with insurance and then I might have a problem with pre-exsiting stuff.

I also don't know of any doctors in Arizona who will be able to help me when I do get insurance.

I can't afford to travel far and I'm worried that I may never know what is "wrong" with me.

Do you know how stupid I feel telling someone if they ask, there not sure what's wrong but don't worry, the worst that could happen is that I could pass out.

Thanks for listening,

Amber.

[rdslots]

New here too, and frustrated as well, but I find I am benefitting from surfing some here -- hey, I can stand on this board! LOL. -- and from the suggestions from others.

Originally dx with NCS in November 2003, it has been a continual struggle to put all the puzzle pieces together. I am supposed to go 3 -6 months w/o an episode before I even drive, but I've yet to go 3 mos. Newest DR is looking for MVPS, and I should hear something from the cardio this week, re: stress test.

I have been through it. You'd think those of us 'newer' to this could benefit from those before us, but most DRs have no clue what this mess is all about. A lot seems to be, unfortunately, trial and error. It made me feel so much better to learn somewhere that these disorders are as unique as the individuals who get them. Knew I was special .

If I've learned anything just recently, it's that you, the patient, must get well-informed (knowledge is a powerful weapon), and be proactive; a good, compassionate DR -- whether a PCP, neurologist, cardiologist, or other specialist (heck! at this point I'll settle for a psychiatrist!) -- is worth his/her weight in gold, and you've got to inform/educate others.

Good luck, Claire and Amby. I am SO with you.