Friday, June 12, 2009

On My Own...

Well, I saw my primary care physician today. I went with the purpose of introducing him to what I have found out, and see if he knew how I should proceed...

Some quotes from him to give you a better idea of what most docs will say-----
1 "I'm only familiar with EDS through the medical books."
2 "I wouldn't even know where to begin to help you manage this."
3 "This is out of my scope of practice."
4 "Sometimes when you have a rare disease you have to travel far to be cared for by people who know how to manage the disorder."
5 "oh, well that would explain the seizure activity."
6 "well you work in a hospital, don't you know people who can help you?"

He did in the end say that he would do some digging and calling around to find someone who can help me or at least advise him to help me...

I have an appointment with a physical medicine and rehab doctor on Monday who said she has seen people with EDS before, so let's see if I get any farther with that avenue.

Otherwise, I guess I am on my own, at least I have God to lead my way.

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