Miserable: Need a Autonomic Dysfunction/Dysreflexia doctor name

[Guest guest]

Hi all,

Can someone provide me with a name and email ID; or a fax number for

a doctor that understands Dysreflexia.

I am at my wits end. I need to see a doctor who specializes in

Autonomic Dysreflexia. I believe only then, would this person be able

to simply read about my symptoms and understand how a full bladder

and my megacolon can push my BP so high. He would then understand how

my EDS and stretchy blood vessels allow me to tolerate BP of 300/200

with no real outward sign.

I am convinced, that a doctor who knows the above could write some

statement that I truly have Dysreflexia. Some months ago, I had

called Kessler rehabilitation institute to ask if I could be seen by

a SCI and/or Dysreflexia doctor. I was told I had to be seen first by

my regular doctors. Yet, my regular doctor shows no concern that I

have Dysreflexia. He seems to presume that since I have EDS I could

have any " weird " thing. So, here is my question:

QUESTION:

Do I have a right, or has anyone ever done this idea? I am thinking

of contacting a rehabilitation center and asking for the head doctor.

I am thinking I might be able to ask for an exception to their rule

because being EDS I am so complicated in terms of my symptoms. I

think I need for a Dysreflexia doctor to diagnose me so I can then

take that to my regular GP.

Also, my pain insensitivity: I need a specialist in rare pain

problems. Having no feeling at all would be really rare I suppose.

Me, I have no feeling in my left side internal organ. If I have bowel

ruptures, I do not know it to even go to the ER. To me, this is

REALLY dangerous. With my recent diagnosis of Incisional hernia ...

that is good. But, the doctors are doing nothing. They said call them

when I have PAIN!!!

Once again I am not sure what doctor to ask for. My pain doctor, a

rheumatologist has been of no help with the pain insensitively

problems. Not feeling pain and having Dysreflexia ... go hand in

hand. IMHO of course. This is again where I need the professional

comments.

If Dysreflexia is caused by pain you cannot feel, and I have problem

where I do not feel pain. There is SOME CONNECTION HERE!!!! A normal

non EDSer would have stroked out with my BP level. Instead, my BP

reaches 300/200 or 40/30 and I just stand there as my flesh

stretches. On a recent visit to the ER where my BP was 247/130. The

admitting nurse was horrified. She wanted to know if I was in pain. I

said no. She wanted to know if I had headache. I said no, that I

would not feel it if I did. At that point I told her of my EDS. My BP

was ignored as my doctor on staff at that hospital had told me to

do ... but the issue of having no pain to report ended with me being

discharged with no treatment.

At my worse, I can be totally miserable ... perhaps some type of

vague nerve pain. Yet, I cannot touch an exact spot that hurts. I am

tired of being told we cannot help you unless you are in pain. Yet,

SCI and/or Dysreflexia means you are having a reflex response to a

noxious stimulus because you CANNOT FEEL PAIN. This get hard to

explain but should be simple to anyone who understands autonomic

Dysreflexia or autonomic dysfunction.

Caro