Mayo Questions

[Jennij]

Hi. I'm hoping to go to Mayo (either MN or AZ not sure which I should approach) and I want to make sure I get in. The last time I tried a few years ago, the info my primary care doc sent wasn't sufficient for them to see me apparently. Not sure what exactly she sent/left out but now i'm gathering all the pertinent labs, reprots, diagnoses, etc, and having her just sign off on it. What I don't know is should I request an appointment at Mayo first and then send documents? Also, should I request with a specific doc at Mayo or just Neuro/ANS clinic? Can anyone help me work this out so that I have the best chances of being seen there and getting the most comprehensive testing? Any suggestions would be hugely appreciated. Thank you. J.

[jrlehnardt]

well i can not speak for the mn one, but i went to az. i think they are probably both really good. i think you may want to consider travel depending on where you live, maybe the closest. but also try to take into consideration the wait list to be able to get in with them. so maybe call around and find out. theway it worked for me was my cardio electrophysicist referred me to dr. goodman the neuro at the az mayo. but for insurance wise (military ins) my family doctor had to put in the referral . after they received the referral i called and tried to get in, and he was booked and hadnt opened up the next calendar month so i just called periodically and got in. but they said they would call me, so i guess i didnt need to keep calling them but from my own experience with so many things in life i just do things myself. and i got in , all my referral said was that i had pots , there may have been more but i dont know, and they excepted me. once i went out there and saw dr. goodman he than wanted me to see other specialists and do tests so they worked with me with trying to get most of the things scheduled while i was out there. but they were very helpful with answering questions over the phone before i went out there. i assume the mn one is a lot like the az one. hope this helps.

if you have any questions just shoot me a message and i will try to help, i know it can be daunting , and it helps to know things.

[Jennij]

Thanks for your input. It is daunting yes and I just want to make sure the process is done right so I can actually get in! Thanks again:)

[corina]

Jennij, you might try a search on Mayo (there's a search box on the top of this page to the right) as several of our members have been there and some really made a thorough review of what tests they went through. Hope visiting Mayo will give you the answers you need!

[jpjd59]

Jennij:

My daughter went to the Mayo Clinic in Arizona. They are great for getting all the autonomic testing, etc. done but I would suggest that you find a doctor close to home to help with the follow up (maybe they could do phone consults with Mayo after you have been there). We found it was just too hard to travel back and forth.

We were told that it is easier to get in to the Mayo in Arizona in the summer and in to the Mayo in Minnesota in the winter).

Hope that helps!

Pam

[Lemons2lemonade]

How I got my referral to mayo:

Tests i had done at mayo ordered by Dr. Goodman:

For lab: 24 hr urine sodium Bloodwork: -am cortisol - 25 hydroxy cut d2 d3 - alt - anca panel - angiotensin converting enzyme - antinuclear ab - ast - vit b 12 - calcium - cbc - copper - creatinine - electrolyte panel - extractable nuclear antigen antibody with ena panel - folate - ferretin - glutamic acid - gliadin antibodies - glucose - hemoglobin 1ac - lactate plasma - paraneoplastic autoantibody evaluation - pyruvic acid - sedimentation rate - tsh - tissue transglutaminase ab iga - tryptase - catecholamine fract ortho endo

And for diagnostic tests: - emg (they also did something called an evoked potential test) - holter monitor - autonomic reflex screen ( sweat test, breathing exercises, and tilt table)

Hope this helps!

[Steph555]

I was turned down by the neurology department at Mayo three times over several years. I then went to a local neuro who referred me to the Mayo "POTS Clinic" and I was in within a couple of months. The "POTS Clinic" seemed to be an interdisciplinary program rather than a defined department. I had appts with cardio, neuro, endocrinology, etc. The person who was my "POTS workup" coordinator was based out of women's cardiology, I think.

[Jennij]

It seems a bit different for everyone but maybe the more specialists referring the better?

Thanks for the input....every bit is helpful in this big puzzle.