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Mayo Clinic and testing


danelle
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Gots lots of questions today. Was just reading over some posts and it seemed like the people who go to Mayo get lots of testing done. Whereas the ones that go to Dr Grubb get a dx and some prescriptions. I saw Dr Grubb in April and was just wondering if it is worth it to go to one of the Mayo clinics to see if they could do anymore for me than Dr Grubb. Do they do extensive testing when they know you have POTS, if so, what kind do they do and is it worth it???

I don't even want to attempt it if not because I have had it up to my "brain fog" with doctors! :)

Danelle

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I've been to the Mayo Clinic, but not Dr. Grubb. Dr. Low was able to confirm that the medications I had tried were on target and to make some suggestions for my internist. The Mayo does really good testing and a second opinion never hurts. Basically, as far as the meds go, I think that all the posts here recognize that there are a finite number of meds that might work--some better than others; and not all meds are right for everyone.

I have now changed to Dr. Hoeldtke and WVU and have had good results with Octreotide. So well, that I can give up midodrine unless I am being particularly stressed out as well as the beta blocker.

The way I figure is that every thing is worth a try. Given that many of the posts suggest that Dr. Grubb is terribly busy and difficult to see even after you have the initial consult, maybe the Mayo is worth a try. At least, you can perhaps validate the treatment you are getting, get other alternatives, and so forth.

Good luck! :)

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I went to Mayo clinic as well, after my local doctor had made the initial POTS diagnosis. They tested me for everything under the sun, put me through ****, and told me that yes, indeed my doctor was correct, my treatment was fine, and I could go home. I wasn't impressed, but I will be moving to Florida next month and Mayo is probably the only facility there that will be able to treat me, so I might end up going back. Although I am still paying for my visit 2 years ago, despite my TWO insurance companies that supposedly paid everything...I could go on and on.

But I do think they do some very complete, involved testing, and if you feel that's what you need then I would go for it. It's just not much fun :rolleyes:

Good luck!!

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My wife and I went to Mayo. I have held Mayo in very high regard as I credit them for saving my life and were involved in my father's treatment and currently treat my mother. I was impressed with her cardiologist. They ran a battery of tests and confirmed what was thought that she had POTS. However, they really didn't do much beyond that. They put her on Nadolol and when she called back to say she wasn't feeling any better and it didn't seem to be working, their response was "You shouldn't be doing anything but getting better". Well, as you can imagine this is the wrong thing to say to somebody who has already been through about 30-40 doctors, neurologists, specialists, etc.

I was disappointed in Mayo for the first time ever in my life. They confirmed POTS and ruled out some other things, but did not offer any relief. We are also still fighting with the insurance company, although our's has only been for 7 months.

Part of the problem is that the plug was pulled when they came up with a treatment plan. They then sent us back here to proceed with the treatment plan (that wasn't working). If you are already diagnosed by Dr. Grubb, I think the only thing that Mayo could do is rule out that there may be other things or possibly a more serious problem as many of these symptoms overlap, but from a treatment standpoint, I would say don't get your hopes up. My wife had Dr. Feeley. I wish she would have got Dr. Low. Can't roll back time though.

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I really agree with the above post- Mayo is a starting point, not a treatment plan. And it is super tough to get them to bill your insurance properly. I've gotten calls every month for the last 2 years telling me to pay the balance of my bill. I have told them more than once that if they could help me out a bit more, I'd go back to work and pay them all their money- but more importantly I have to make sure my family has food to eat for now. That's my main complaint with them- greed. Nobody should have TWO Blue Cross/Blue Shield insurance plans and still get billed for more than half of the services rendered.

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Yeah, I understand about the insurance mess!!

Thanks for all the input, I guess I will just try out my new GP in July(his first appta available) and see how that goes. I can't afford to go anywhere right now anyway. Gosh, I can't afford to go to the grocery store right now, don't feel like it physically anyway!! :rolleyes: Ya know what I mean jelly beans???!!! :P POTS is for the birds-nah, i wouldn't wish it on them either ;) .

Danelle

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I would have to agree with everyone else. My son saw Dr. Fischer in Peds who was awesome, he also saw Dr. Low who did many many tests and tried a few meds with us and then told us he couldn't offer us anything else for our son. Maybe an ssri but we needed to get it from our primary care Dr.

If you really can't find anyone else around I would go there because it is very difficult to find Dr's who treat POTS.

GOOD LUCK !!!

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Message to Ethansmom: Regarding moving to Florida and finding a doctor that understands POTS. There is a dysautonomic condition known as MVPS that has a center in Florida. I know nothing about its reputation, so this is by no means an endorsement, but it might be a starting point that would be more versed in POTS than just your regular GP. It is Mitral Valve Prolapse Center of Florida, Florida Institute for Cardiovascular Care, 3702 Washington Street, Suite 325, Hollywood, FL 33021 Telephone: (954)967-6550, Toll Free: 1-877-96-HEART. This info plucked from the mvpsupport.com web-site.

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POTSParent:

Thank you! Thank you! Thank you!

I have been searching everywhere to try and find someone in FL that I can schedule an appointment with soon, since I'll be moving down there next month. I will start here, and see where it leads me! Thank you again :P

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Jessica, I used to be in Fl for a short time and I know there is an active dysautonomia support group. Also, someone had recommended to me a doctor in the Tampa/Clearwater area who is an internist who has treated POTS. Since reading that you might go to FL, I hoped that someone might post the info. for you. I am trying to see if I have his name somewhere in my files. Will let you know if I find the FL support group info or Dr. name.

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Thanks for the further info geneva!

I will post separately on the FL move, since it's off topic for this post. We did decide to move there for sure :P

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