Hi! My daughter has been suffering with POTS, diagnosed about 6 yrs ago by a tilt table test. She had mono in college and ever since has been so tired that she can barely work, although she does. She is going to be married in a few months and cannot even begin to work on the wedding because she comes home from work and goes to bed. Her fiancee, whom she lives with, is very understanding, but since she sleeps all weekend to get ready for work the next week, he goes out by himself. It is not the way to start a marriage. She is afraid that she will not be able to work much longer, as she continually has to leave work. She has seen numerous MD's, eats salt, drinks alot, takes a beta blocker, also the steroid (I forget the name), sees a Neurologist, Endocrinologist, Cardiologist, and now we have tried an alternative medicine MD. Does anyone know a great POTS MD in either NJ or NYC? Does anyone ever go on permanent disability because of POTS? HELP!
Welcome, Mae! I'm sorry your daughter is having so much trouble with her dysautonomia. I don't know personally of a great POTS doctor in the area you speak of, but you might look at this info on dysautonomia specialists:
Hi Mae. You might see if Dr. Julian Stewart would see your daughter. He is at the New York Medical College. He has done numerous studies on various types of POTS, and is extremely knowledgeable on causes and treatment.
My son has been diagnosed with POTS, and I wish I had the chance to bring him to Dr. Stewart. We're in California.
I live on Long Island and have POTS. I run a support group for NY area POTS/NCS/dysautonomia patients on Facebook. We often share info on good doctors, doctors to avoid, etc. If you want to join, send me a message at potsgrrl(at)gmail(dot)com.
And I recommend Dr. Stewart too. He usually only takes pediatric patients, but I have heard that he sometimes takes up to age 29. He is very nice and even e-mailed back and forth with me even though he didn't treat me as a patient.
I am not pediatric, and all of the so called POTS experts in NYC kind of sucked. So I went to Cleveland Clinic.
I know you asked about NJ/NY for a POTS specialist, but there is one in Johns Hopkins in Baltimore, MD named Dr. Peter Rowe. His treatment protocol is available online, including the salt/liquids that you mentioned, but also drugs like Florinef. However, I've ready elsewhere from a chronic fatigue doc (Dr. Paul Cheney) that Florinef can stop having therapeutic effects after 6 months so he advices against it.
You mention your daughter tried alternative medicine. Has she seen a naturopathic doctor specifically? They might recommend functional, biochemical testing, like those offered from Metametrix. They are very expensive, but then again, there is the expense of many doctors, etc. in the first place. And if the test results point to something definitive, it gives you something more concrete for your daughter to do (i.e. take certain supplements).
I am NOT a naturopathic doctor, nor do i work for Metametrix. I do have a relative with diagnosed chronic fatigue, fibromyalgia, orthostatic intolerance and gut issues. After seeing many conventional MDs, we're just about at the point where we are considering such a naturopath who will perform these tests. It sounds like its important to see an experienced one who is knowledgeable about interpreting the tests. I was a little skeptic at first as to whether the tests were valid, so I posted on various CFS sites. And, the feedback I saw from various sources are that these tests, can be very meaningful to at least point you in the right direction as to what might need to be "fixed".
Oh, and by the way, compression stockings can help with keeping the blood out of the legs, and they do come in a variety of colors. A local hospital supply store has just plain tan ones, but there are other vendors who make more fashionable ones (that look more like leggings) for symptomatic relief.
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