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What sort of suggestions are you looking for?

I was there 2 weeks ago and it was a mixed bag. You can read about my experience here. I was pretty disappointed with their attitudes. None of the doctors seemed to have any concern for me. The women performing the tilt table test were very very nice though. Just be prepared to be interrogated and asked the most ridiculous questions.

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What I especially like is that fun questionnaire they have you fill in at every appointment-------------it's on a little computer note pad thing---( I'm not sure what to call it). It clearly looks like they are trying to get a psycologica assessment.

The Cleveland Clinic is definately not up to par on dysautonomia, but does have a doctor there who is familiar with it. They are in the dark ages when it comes to EDS, and the spine instability related to it. They gave one of our fellow potsplace members who is diagnosed with POTs and EDS a psyc diagnosis. This very intelligent young woman clearly has all of her faculties, and I'm sure she has the ability to relate to these doctors. I do question if some of those doctors have a sound mind themselves, because when I talked with this young woman I couldn't figure out how those docs would come up with such an obtuse diagnosis. It's clear that her PHYSICAL symptoms are related to POTS and EDS.

The Cleveland Clinic has areas of interest, and they are one of the top teaching hospitals in these areas------------BUT, I assumed wrongly that this was the place to for help with my spine instability related to the EDS. They have very little knowledge on connective tissue disorders, and the many complications that are related to it.

Maxine :0)

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Guest humanb4monitor

I will be there on teh 13th. I am in with the TOP TOP TOP lady of the Sleep dept BECAUSE that is what is gonna kill me! As well...she will know about POTS and CFS and will have heard of my particular disoder.

It is a liftime's worth. :ph34r:

I had a dismissive exp. there 2 years ago so I was adament about the wanting best and most knowldgable.

The reception took to me so that helped--being a people person. :lol:

I will do ANYTHING for help with this. Chicken or egg? POTS and Sleep disorders??? :P:angry:

I always stay at the same place 10 miles away if you need a suggestion.

As well....THIS TIME.. I am staying and gonna go to a beach and lighthouse 20 miles due east of the clinic.

I can't go to a place w/o something wonderful too.


I always go the nite before too. Easier on my broken self.

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Guest humanb4monitor

You may consider calling them and asking secifically for what YOU NEED from the doc and what you nned for you regarding THEIR knowledge and YOUR knowlegde of your particular case. It can work with sweetness and humor!

That way you will feel 'heard' when you leave.

I asked for a doc that has heard and knew of ______etc. that is how I got in with the big wig. I was not going to deal with aresident who would try and tel me I have RLS!

Good luck and much much (((support and success)))

Do something good for you today that maybe forgets POTS. Like use your hairbrush for a microphone like I did last month! :ph34r::P:angry:

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