Hi there. I am new to group with new dx of POTS after tilt table study. Didnt pass out but Dr. said test was + due to heart rate going up 30 bpm over baseline HR. Also feel I have chronic fatigue syndrome. Have some abnormal immune panel labs but apparently dont qualify for treatment such as IVig.Cardiologist here in Indiana is working on making referral to doctor who specializes in autonomic dysfunction at Mayo. I know from reading posts some of you have been to Mayo and Cleveland. Do they evaluate patient holistically, i.e., will they look into chronic fatigue issues and, immune system issues, etc., as part of my clinical picture, or will they only be looking at my HR/ autonomic dysfunction? Also, can any of you tell me about recent good/ bad experiences you had with specific Mayo docs re: similar workup? Im a little concerned that my cardiologist may be sending me to the AZ Mayo campus vs Rochester as the name of the doctor I think his nurse said she was trying to make the referral to is Shen and when I looked that doc up he is in Phoenix. Just figured this out last night so will be checking into that today. My cardiologist liked this guy because he has apparently done alot of work/ written alot of articles regarding POTS. If this referral doesnt work out do any of you recommend anyone else at Cleveland Clinic, MN Mayo campus or Vanderbilt? Any info you can provide will be appreciated more than you can possibly know. This has been a long journey. ...hoping to get some answers and relief...just like most of you I suspect. God bless!
The only doc I'm familiar with at Mayo AZ is Goodman. I've not heard of Shen before, good or bad, so sorry I can't give firsthand input there. According to publications, Shen has worked mainly with Dr. Low, Mayo's guru of Dysautonomia/POTS:
From Mayo's website, it appears as though he was mentored by Low in Rochester before starting his career in AZ:
Looks promising to me?
In general, if you want to ensure that you get a more broad workup rather than just a narrow focus on autonomic, you need to make sure that both you and your referring physician make that clear to them that that is needed. Even if your referring doc isn't entirely with you in your belief that these abnormal immune labs are relevant, if you ensure that he passes the labs along as part of his referral anyway, then you can call yourself and impress upon them that the labs are abnormal and you want to make sure you are worked up by an appropriate specialist for that while you are there as well. Make sure you address each specialty you think you need to be seen by one by one, and that ample "evidence" is provided that you need to see those specialties by making sure your doctor passes along the relevant portions of your chart.
It's a lot of work before hand, but it will help you get the most out of your visit once you're at one of the big autonomic centers! I had my testing at Cleveland Clinic but Mayo isn't very different. There's been a disproportionate amount of negative feedback about Vanderbilt lately, so I'm not going to address them at the moment.
Let me know if there are other questions I can answer and welcome to our community!
I highly recommend Dr. Shibao in the autonomic clinic at Vanderbilt. Vandy also has an inpatient research unit that you might be a candidate for. That is where I met her, she was one of my attending doctors while I was there for research.
I agree with Heiferly, that you have to be assertive with Mayo and TELL them the specialists you want to see. They won't know unless you tell them in advance. That will make for a more efficient visit for you, since the docs will all be scheduled before you arrive. Once you see your lead doc, s/he can also schedule the tests and/or other docs you need to see, but that takes time. Plan on a 2-week visit (at least in Rochester), because the folks you see the first week may not be available till the second week. That's how it worked for us.
Mayo is very wholistic, but *caution*: with the Pediatric docs anyway, they like to steer you into the pain rehab clinic. In other words, they take your pain killers away and teach you to calm your autonomic nervous system with deep breathing, exercise, etc. That happened twice to my daughter, who got much worse after. She has EDS, though. Good luck!
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