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Choosing Between Levine, Wolfe, Suleman Or Shabani


martiz
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Hi Group,

I have an appt with Dr. Levine for mid-March. Seeing an endocrinologist today to try to get a baseline level of hormonal testing to make that appt worth the drive.

Doing some research, I see that there is a Dr. Gil Wolfe and Dr. Amer Suleman.

I have been diagnosed with POTS (several times) and have had the following autonomic testing by Dr. Shabani but he does not go further than these tests - does not determine why type of POTS or does any testing to determine triggers/causes and no medication.

  1. Sweat Test:
    For this test, small plastic capsules are attached to the arms and legs. A machine is used to stimulate the sweat glands and measures sweat production. You may feel a slight local burning or tingling during this test.
  2. Heart Rate during Deep Breathing (HRDB)Test:
    This test measures your heart rate variation during deep breathing. You will be asked to breath deeply and steadily in a rate of 6 breaths/minutes guided by a moving green light.
  3. Valsalva Test:
    During this test you blow into a plastic tube for 15 seconds hard enough to produce a pressure of 40mm/Hg as indicated in a hanging watch that you will be asked to watch. This test measures your blood pressure and heart rate response to valsalva maneuver.
  4. The Tilt Table Test:
    After lying on a table for the first part of the test, you will be raised to a nearly upright position. You will be secured to the table so you cannot fall. The test will measure your blood pressure and pulse during different positions.

Question: Should I instead see Dr. Wolfe or Dr. Suleman or keep my appt with Dr. Levine?

I have tried Dr. Levine's exercise protocol and don't have a problem being on a scaled down version but I know I will never be able to reach his targets without risking a relapse of my ME/CFIDS.

Mostly, I am looking for a bit more refinement of my diagnosis through testing and some general medication suggestions. Then next step would be to find someone locally to go through the trial and error with me. My endo might be able to do that and I have an appt next Friday with an internist who is supposedly open to learning about conditions that she is not familiar with.

Any advice? (I have read all of the posts about Dr. Suleman - could not find any for Dr. Wolfe). Leaning towards seeing both at some time but not sure insurance will pay for that so I hope to maximize the drive/expense.

Thanks for any help!

Marti

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That's a tough one. I haven't seen all of them but I'm very happy with Dr Suleman!

When I went to him last fall I had already been diagnosed with POTS. He is interested in finding the cause and in doing so he does ALL his baseline testing if you really want to stick with his as your dr. So even though you've already had some of his tests done he will want to do them for himself.

After all the tests (I think I had 18) he talk about his findings, what he thinks is the cause, and what his treatment would be. 

If you live in DFW he may, depending on your test results, refer you out to others like an exercise physiologist, clinical nutritionist and so on. I think sometimes he had out of towners either consult them or help them find someone on their town.  He has some tricks up his sleeve :)

I've always found him kind, respectful, and very helpful! There's a Facebook group "Texas Association For Dysautonomia Awareness"  that may be able to answer about the other dr's.  From what I've read from others in Dallas, Dr Levine isn't into much outside of his exercise program. If you cant do it, he can't help you. I've also heard people say he has poor bedside manner.

Before I chose Dr S, I read all the posts too and it sounded like he offered what I wanted and that's why I picked him.

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My endo added Dr. Nasir at Methodist Hospital in Houston to my list.

Here is what I have discovered:

Dr. Levine - not sure what tests he does - focus is small heart and exercise only.

Dr. Nasir - focus is heart , defibrillators and pace makers and it looks like the main testing they do for POTS is the TTT.

Dr. Shabani - focus is neuromuscular disorders

Dr. Gil Wolfe - same as Shabani - neuropathies and neuromuscular disorders.

Dr. Suleman - seems like a mix between cardiology and neurology - his list of services has me salivating.

I think I will go with Dr. Suleman (I pray that he takes my insurance!). Thanks for your input - it means a lot to hear your experience.

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I have seen Dr Levine and Dr. Suleman, both dx me with Pots. The thing with dr. Levine is that he doesn't see patients on a daily basis such as follow up care. He is a professor and only gives the Pots dx. On the other hand dr. Suleman has been my dr for 2 1/2 years. He also has a degree in journalism and will be starting his own talk radio or talk Internet live site to spread the word about Pots. He is a genius I think. He has 3 offices, speaks at the meetings held once a month in Richardson and devotes all his time to his patients. I don't know anything about the other 2 drs. Good luck!

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