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Anybody been to POTS clinic and found that it wasn't POTS?

Posted by @kmeyer301 in Brain & Nervous System, Oct 6, 2012

My wife has appointment in 2 weeks at Mayo. Was diagnosed with POTS last year and recently told at 2nd hospital that they don't think she has POTS but more likely a csf or other issue related to brain surgery she had in '98. Has anyone had the experience of being diagnosed with POTS from a tilt table test to then find out at Mayo it was something different? If so did you have to reschedule to see the other departments, say, neurology, or did they just keep you there until they figured out the problem? We are very hopeful that Mayo will be able to either give her a complete diagnoses of the POTS or find what the problem really is. This all started almost 2 yrs ago and she first spent 10 days in hospital in Atlanta with them looking for a CSF leak, which they could never find. They referred her to the hospital that did the tilt table and said POTS.


Posted by @misskaseyvolk, Nov 24, 2012

Hi 🙂 I was diagnosed with POTS in 2010 after a liver transplant. I too was diagnosed after a tilt table test. After the table test I was referred to a neurologist and was given medication and my symptoms have been controlled since then and has made my life a lot easier! May I ask what they found out at your wife's appointment?

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