Dysautonomia testing scheduled ...

[Guest guest]

Hi all,

I am scheduled to be tested in June at the JFK Neuroscience Institute. Has

anyone had this. What will they do? I already had this specialist whack me with

push pins. I asked him if the pins were blunt or sharp. I know I have

insensitivity to pain or indifference to pain but that was weird. Well, so far I

have

a diagnosis of Autonomic Dysregulation, Autonomic Dysfunction, Autonomic

Dysreflexia, EDS, Dysautonomia to just name a few. The latter was my GP when he

realized about the no pain in my GI area. He referred me to a Cerebrovascular

specialist. He confirmed that my memory loss is not stroke or TIA related, but

the severe rise and severe drop of my BP. He said I am fine. Then, he refers me

for Dysautonomia testing I supposed to confirm things. I wish they hurry, each

specialist is always so over booked.

When my husband had his neuro test last year he said his pin pricks hurt

Hmmmm. Caro.

Caro

[Guest guest]

Hi Caro,

It really depends on the " specialist " but I spent a week at NIH for a POTS

protocol and probably had things done to me that no " specialist " in private

practice would do! There are some common tests though like the tilt table test,

Valsalva and others. Who gave you all the diagnoses, some of which seem to

overlap a bit to me? Was it based on symptoms?

[Guest guest]

In a message dated 4/8/2004 11:09:00 PM Eastern Daylight Time,

Mdmssmile@... writes:

> Who gave you all the diagnoses, some of which seem to overlap a bit to me?

> Was it based on symptoms?

>

It started with my new Ehlers-Danlos Syndrome (EDS) knowledgeable

Rheumatologist. He was to check me for EDS and during that exam decided I had

autonomic

Dysregulation symptoms. He ordered many blood test to rule stuff out.

During my next visit to him, he added or changed his diagnosis to autonomic

dysfunction, megacolon and colonic diverticulosis. More tests were ordered.

Most of my tests was interrupted by my husbands health and care.

Back on track, it was next found that I have rare colonic duplication. It is

confirmed to be a source of severe ANS dysfunction. Just touching that

duplicated area spikes my BP OR drops the BP. My GP doctor smiled at me and said

I am

sooooo unique. Each thing I have is so *RARE* that doctor do not know what to

do with me. I was told to order a medi alert bracelete. All, is however

related to the EDS. After my Neuroscience institute testing I am next scheduled

to

be seen at an institute of genetic medicine for EDS. Hope some of this helped.

I cannot explain me in one email. My bottom line, anything that should have

caused me pain (noxious stimulus) triggers severe Autonomic Dysreflexia. Caro

[Guest guest]

In a message dated 4/8/2004 11:09:00 PM Eastern Daylight Time,

Mdmssmile@... writes:

> Who gave you all the diagnoses, some of which seem to overlap a bit to me?

> Was it based on symptoms?

>

It started with my new Ehlers-Danlos Syndrome (EDS) knowledgeable

Rheumatologist. He was to check me for EDS and during that exam decided I had

autonomic

Dysregulation symptoms. He ordered many blood test to rule stuff out.

During my next visit to him, he added or changed his diagnosis to autonomic

dysfunction, megacolon and colonic diverticulosis. More tests were ordered.

Most of my tests was interrupted by my husbands health and care.

Back on track, it was next found that I have rare colonic duplication. It is

confirmed to be a source of severe ANS dysfunction. Just touching that

duplicated area spikes my BP OR drops the BP. My GP doctor smiled at me and said

I am

sooooo unique. Each thing I have is so *RARE* that doctor do not know what to

do with me. I was told to order a medi alert bracelete. All, is however

related to the EDS. After my Neuroscience institute testing I am next scheduled

to

be seen at an institute of genetic medicine for EDS. Hope some of this helped.

I cannot explain me in one email. My bottom line, anything that should have

caused me pain (noxious stimulus) triggers severe Autonomic Dysreflexia. Caro

[Guest guest]

In a message dated 4/9/2004 4:38:31 PM Eastern Daylight Time,

CDillardda@... writes:

After my Neuroscience institute testing I am next scheduled to

be seen at an institute of genetic medicine for EDS

Caro, that sounds like a great place to go! Hopefully, they will be able to

help you. Where is it? Can I come too!

[Guest guest]

In a message dated 4/9/2004 4:38:31 PM Eastern Daylight Time,

CDillardda@... writes:

After my Neuroscience institute testing I am next scheduled to

be seen at an institute of genetic medicine for EDS

Caro, that sounds like a great place to go! Hopefully, they will be able to

help you. Where is it? Can I come too!