Finding a Doctor

[patient915]

Hey everyone, so I've decided that I want to get autonomic testing done.  I talked this over with my POTS doctor (who is great, but she doesn't have an autonomic lab) and she said she thought this was a good idea.  I'm wondering if anyone has any recommendations for doctors for me to see.  I'm willing to travel anywhere in the US to see the right doctor.  I want a doctor that 1) has a full autonomic laboratory for testing and 2) will go over the test results with me and then recommend a good course of treatment.  I don't want someone who will just do the testing but then send the results to my doctor to interpret.  I've seen all of the list of doctors on the websites (dinet ndrf) and researched them but nothing compares with actual personal experience (and I really trust you guys).  Thanks for your help!

[CHRISTYDRAKE]

No, not at all.  They scheduled the TTT, an MRI and endoscopy for our first trip.  With the TTT, the QSART and vascular something or another was done.  We had a follow up 3 months later that tested Thermoregulartory sweat test, capsule endoscopy plus exam.
All of our communication though is done through Dr Gisela' Chelimsky's office since he has a lot of GI related symptoms and since she is a pediatric dr.

I do know that their autonomic clinic appts are on Thursdays, exams.  Now that all of the testing is done, we go back every 6 months for follow up.  Sorry you didn't have the same great service/communication that we received.

Christy

[patient915]

My mom and I called Dr. Chelimsky's office this morning.  Besides the fact that the person we talked to was snippy, we learned that they do a tilt table test on a Tuesday, then a follow-up with the doctor on that Thursday and then they decide if you need more testing done.  She said that I could only end up getting a tilt-table test done and that's it.  I don't really want to travel all the way from California to Ohio just to get a tilt table test (I can get a tilt-table test done where I am).  Also I could have to spend a couple of weeks there just for 3 days of actually going to the clinic because the woman said the doctor only works 2 days a week.  Is this the same experience you had?

[CHRISTYDRAKE]

They do continue consultations after testing.  We were going every 3 to 4 months back to them for follow up and now we are on 6 months for follow up.  I can email the nurse practioner at any time for questions and concerns at any time though.  So far, the response back from the nurse practioner has been within 24 hours, so I'm also pleased with their communication after the appts.

Christy

[patient915]

I've read about both those doctors and they both looked good.

Christydrake, that's great the Dr. Gisela Chelimsky is a gastroenterologist.  I love my gastroenterologists at home but none of them really know about POTS.  My GI symptoms are some of my worse symptoms.  From their website it seems like they do a lot of different types of testing which is good.  However, it was unclear from their website whether they also do consultations after testing too.

vbc, I live in northern california but my mom and I are willing to go anywhere to get the right treatment.

[vbc2000]

I just got a recommendation for Dr. Nahm at Greenwich Hospital in Greenwich Ct.  It's pretty close to me and I'm going to be checking it out.  He was recommended by Dr. Julian Sterwart who runs a pediatric autonomic center in Valhalla NY.  I have high hopes about Dr. Nahm.  I'm going to be contacting them next week.  Luckily it's closer to my job so maybe I'll be able to go during the workday.  

You said you would travel anywhere but where are you?  I really hope you find someone good.  If you decide to check out Greenwich hospital, please let me know how it goes.

http://www.neurologyofgreenwich.com

Stephanie

[CHRISTYDRAKE]

I really like my son's doctors in Cleveland at Case Western University Hospital.  They have a full autonomic lab there and they not only diagnose but treat dysautonomia.  Dr Thomas Chelimsky is the doctor and he is a neurologist.  We also see his wife, Dr Gisela Chelimsky, a gastroenterologist since a lot of my son's symptoms have been GI related.

With their help, Cody has returned to school after being out for 1.5 years.  He has made a lot of improvement.  They are both very caring and thorough doctors.  They have a youtube video, I think you can find it if you search Dr Thomas Chelimsky.

That's my 2 cents,
Christy