Re: Miserable: Need a Autonomic Dysfunction/Dysreflexia doctor name

[Guest guest]

Caro

It has been my experience that no matter what my seem of little consequence

I go to the doctor...alot of them in emergency and med clinics don't really

know what EDS is and I have VEDS, however 9 times out of 10 I have told them

or they ask what test do you want?? I live in Canada and I am not sure where

you live and if it makes a difference. All I know is that since my diagnosis

I have found that I have to stand up and tell them what I want!!! Also I

have a wonderful GP who wants to learn about EDS and I am getting her the CD

(Vascular) at her request.

I wish you luck.

Betty

Miserable: Need a Autonomic Dysfunction/Dysreflexia doctor

name

> 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

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

>

>

[Guest guest]

Caro

It has been my experience that no matter what my seem of little consequence

I go to the doctor...alot of them in emergency and med clinics don't really

know what EDS is and I have VEDS, however 9 times out of 10 I have told them

or they ask what test do you want?? I live in Canada and I am not sure where

you live and if it makes a difference. All I know is that since my diagnosis

I have found that I have to stand up and tell them what I want!!! Also I

have a wonderful GP who wants to learn about EDS and I am getting her the CD

(Vascular) at her request.

I wish you luck.

Betty

Miserable: Need a Autonomic Dysfunction/Dysreflexia doctor

name

> 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

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

>

>

[Guest guest]

Caro

It has been my experience that no matter what my seem of little consequence

I go to the doctor...alot of them in emergency and med clinics don't really

know what EDS is and I have VEDS, however 9 times out of 10 I have told them

or they ask what test do you want?? I live in Canada and I am not sure where

you live and if it makes a difference. All I know is that since my diagnosis

I have found that I have to stand up and tell them what I want!!! Also I

have a wonderful GP who wants to learn about EDS and I am getting her the CD

(Vascular) at her request.

I wish you luck.

Betty

Miserable: Need a Autonomic Dysfunction/Dysreflexia doctor

name

> 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

>

>

> To learn more about EDS, visit our website: http://www.ceda.ca

>

>

>

>