MNsue Posted April 12, 2006 Report Share Posted April 12, 2006 On monday I finished my second TT test in two month. I was diagnosed with POTS, however I have tremors and left side weekness that is still unexplained. I was told to make an apointment with a Dr. Sandroni by the U of M Neuro nurse, however at an EMG today, the physician said Dr. Lowe is the expert at Mayo in autonomic disease. Has anyone seen either of these MD's? Were they helpful in dealing with the Neuroligcal issues you were experiencing? Thanks for your input.Rhonda Quote Link to comment Share on other sites More sharing options...
goldicedance Posted April 15, 2006 Report Share Posted April 15, 2006 Rhonda...Dr. Sandroni works very closely with Dr. Low. In fall of 2005 when I was so far in the hospital POTs hole my internist called Dr. Low. He was away. My doctor spoke with Dr. Sandroni. My doctor found her very approachable, full of advice about starting midodrine, and answered loads of questions about POTS. She told my doctor to feel free to contact her if she had other questions. Dr. Low is one of the founding "fathers" of POTS. If you can't get an appointment with Dr. Low, I would opt for Dr. Sandroni. It takes several months to get a Dr. Low appointment.Lois Quote Link to comment Share on other sites More sharing options...
Eillyre Posted April 15, 2006 Report Share Posted April 15, 2006 I saw Dr. Low -- it was the turning point in my illness. Not only did he find an effective medication for me, he explained POTS, answered all of my & my parents' questions during the consultations, and has continued to answer questions I mail him. He even took time to discuss other neuro problems I was experiencing. I found him to be an excellent choice for handling POTS/neuro issues. Good luck in your search!Angela Quote Link to comment Share on other sites More sharing options...
Poohbear Posted April 15, 2006 Report Share Posted April 15, 2006 Dr. Low has was "ok" the first time I saw him in running tests but he did not spend much time answering my questions. When I've emailed him asking he coordinate with other Mayo Dr's regarding my gastrointestinal problems and addressing the nerve pain and neuropathy I'm having he told me those had little to do with autonomic function. Even though he told me to return in a year he now is saying there's nothing he can do for me.I also saw Dr. Benarroch. He was good. I think you may have better luck with someone other than Dr. Low if for no other reason he's gone a lot more than the others. Quote Link to comment Share on other sites More sharing options...
shannon Posted April 18, 2006 Report Share Posted April 18, 2006 I have had good experiences with Dr. Low. He was the first doctor I saw that really understood POTS, and he really validated all of the symptoms I was going through. Also, I have heard from several ppl that he is tough to get an appt with. I got in very quickly though. My local doctor called Mayo Clinic to tell them he didn't know what to do with me and that my test results were whacky. They got me in within a week or so. If you have a doctor who is willing to give you a referral, that seems to be the quickest way to get in. Good luck!Shannon Quote Link to comment Share on other sites More sharing options...
MNsue Posted April 18, 2006 Author Report Share Posted April 18, 2006 Shannon,Thank you for the update. My PCP is calling today to see if I can see Dr. Low. I am hopeful that I won't have to wait months for an appointment. Is he the MD that diagnosed you? Was he able to tell you what type of POTS you have?ThanksRhonda Quote Link to comment Share on other sites More sharing options...
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