I have read on this site that the Mayo Clinics are great for treating/diagnosing dysautonomia. What do they do? I was diagnosed with POTS following a positive tilt. Since then I have been taking midodrine, florinef and bis-propolol for six months. I feel worse. I find that when my bp is higher I have an increase occurrence of shortness of breath, shaking, pounding heart, tightness in chest/throat. Overall, the meds have had no lasting effect on my bp and I feel more tired than before. Before I head to Mayo, I wanted to know if they did more than I have already done. I live in Canada so the out of pocket expenses have to be considered.

Have a g'friend here who went--got her POTS dx--but says then they sent her back home to be "treated" and she was NOT happy 'cause it cost her 30K cash to be diagnosed and she left feeling no better. They gave her the same meds you're on--none of which worked for her--in fact she got worse and ended up in a wheel chair--and they wouldn't call her back even after a time or two. evenutally she got off all of them--and now sees a homeopath and does diet and vitamins and is driving again.

A side note--she's hypogycemic.
I STILL think a Glucose tolerance test with insulin levels is a MUST rule out thing for all of us.

Still she says they VERY much wait on you hand and foot--and she DID get her diagnosis--a new thing for her. Just it didn't do her much good in the end.

But there are LOTS of Mayo's--lots of docs--she went to the one here in Fl. As a result of her comments tho I decided on Cleveland clinic instead--and they DO take insurance at least.

A funny note: AFTER she paid a $30,000+ dollar bill,(larger than expected) they THEN later that day hit her up for a "donation?"

She about freaked!!!

That's all I know.

Hope it helps!

Did she have insurance?

I went to the Mayo in Jacksonville in May. They kept me on the same meds (florinef, midodrine, etc..)

I loved the care I got. It was exceptional, but they didn't tell me anything I didn't already know. I have had POTS for 11 years and they still say I will be cured. they gave me some exercises to do (which I am not able to do). They told me within 6 months to a year I will be fine. It has been 5 1/2 months and I am on IV therapy 3 times a week now. My bladder, heart, esophagus, intestines, and brain have been effected. I am a positive person, but it seems like things are getting worse instead of better. I don't think people/doctors truly know what is going on with POTS. they seem to want to catergorize every patient in the same bubble, but I feel we need to be treated seperately on a individual basis.

After my bill of $88,000 I don't feel like it was worth the money. I guess I was looking for a miracle.

did you guys have insurance to help cover this?

My understanding from her--and again part of the reason I chose Cleveland Clinic--is that they do not accept insurance. She did NOT expect this she said. They gave her bills and she had to file later--but had to pay on the spot.

But again, there's more than one Mayo Clinic--this was in Florida and a year or two ago.

Still ASK as this may well be the case with all of them.

I went to Mayo in Scottsdale in May and they took my insurance (Cigna PPO).

But on their website they do discuss how they bill the insurance and that typically the patient is responsible for the difference between what the insurance company will pay and the actual bill. I was fortunate as Mayo is 'in network' for Cigna so they don't require the patient to pay the difference.

Mayo in Jacksonville does take insurance, but they are "out of network" so you still end up paying a substantial portion. In my opinion, the one here is not as good as the others...

I went to Mayo in Rochester and they took Health Partners, my HMO. Check with your insurance and get a referral if you need to.

Mayo confirmed my POTS diagnosis, told me I would get better, kept me on the same meds I was on. I was unable to get them to follow up with my doctor.

Sleepy,

I agree with you. about their follow up.

I went to Mayo in Rochester. They took my PPO, but I still had a portion to pay. I went there without a diagnosis. They sent me through many of their specialties and I had tests upon tests.
They finally gave me a POTS dx, put me on the basic meds (even Mestinon), told me I had a good chance of getting better and then off I went.
Later my doctor at home called and they were very responsive. I even called there myself three times and they responded.
I'm glad I went. They ruled out a bunch of other stuff.