Mayo Clinic Mn Or Local Doctors?

[2manyfurkids]

Hi,

I haven't posted in a long time. My doctors who originally thought Addisons Disease or Bartter's Syndrome are now back to the POTS diagnosis. My endo has referrred me to Mayo Clinic, but the waiting list is 6-12 months.

Today, I had a gastric emptying study for gastroparesis. Otherwise, I feel like maybe I should wait for Mayo rather than go to another neurologist because I'm on Florinef already and with the help of this website, I can do what I need to do to feel as good as I can. Mayo has such a good reputation for research on Pots, I'm probably better off waiting, huh? Thanks for your opinions, Karen.

[goldicedance]

Suggestion: see about getting your name on the waiting list; in the meanwhile, you can explore other options.

Have you though about Mayo JAX?

Good luck.

Lis

[kayjay]

Hi- I waited to go to mayo- although it was 3 months it felt like forever. For me it was worth it. I have had pots for 11 years but it took me 10 years to get diagnosed. You must have a great endo- my endo from Johns Hopkins just wanted me to have a pheo and he ignored all kinds of lab results. Also I cannot tell you how much better Mayo is overall as a hospital then anywhere I have been. My husband and I were constantly amazed.

If you can get "stablized" at home and wait to go.. I think it will be worth it to you. I got clear information. Difinitive answers and now I can go back or contact Mayo any time I need to. One thing to keep in mind though.... Mayo told me that "recovery" (such as it is for me b/c I have had POTS fpr such a long time and got it when I was expecting my first child) may not be what I want. Anyway I did not come home from mayo "cured". They repeatly told me that it would be at least 9 months before I was doing better. I have to remember to keep my expectations realistic.

I live in PA and would want anyone I know with an unusal problem to go to Mayo. ( although for surgery I would still go to Johns Hopkins). For Jana - Rochester Minn. I think of that as THE Mayo clinic.

I know I am rambling but I LOVE THE MAYO CLINIC and I hope you go!

[potsgirl]

I have a request to make...Can people please write WHICH Mayo Clinic they're talking about? There are several locations, and some are better and have more specialists for POTS than others.

Mayo Rochester (MN) has a sub-group of specialists who work with POTS/dysautonomia, and I think they're fantastic. Definitely worth the trip, and you can ask to be put on a cancellation list. Also, if you try to get an appointment with Dr. Brent Goodman, the neuro POTS specialist at MN, you may be able to get in a little more quickly. He was my doc, and he's great...spends lots of time with you, etc.

Good luck!

Jana

[janiedelite]

I waited 3 months to get into the Mayo (MN) autonomic department (my neuro applied 11/08 and I was seen 1/28/09). It was worth it. They have the all the testing you need right there, and if they see a cardiac or GI issue that needs investigating then it can be done during that visit, too. They made sense of all my wacky symptoms for me. I agree that it doesn't hurt to keep investigating with local docs, but if you have a doc who can apply to get you into Mayo then go for it.

[2manyfurkids]

Thank you so much for your responses. I am on the waiting list for Mayo Clinic(Minnesota) and it sounds like I need to wait it out. I live in Wisconsin so it is only a 5hr drive. Thanks again, Karen.

[yogini]

You can always cancel at Mayo, even at the last minute. I'd get on the waiting list and pursue local drs at the same time. (But I would double check on that, b/c I thought waiting list at Mayo was the same as a rejection?)

Anyway, the local docs are the ones that will manage your case in the long run. I would try one of the docs in your area listed on the DINET main page - maybe you can find other people in your area and get a recommendation. You also might have better luck with a electrophysiologist cardio than a neuro (neuros aren't usually helpful unless they specialize in conditions).