Re: diagnosing question (kinda long)

[Guest guest]

are you taking sinemet? i'm thinking some of my problems are drug-related.

nancy spires

[Guest guest]

,

If you think your problems are drug related, first read the sheet

that

came with the drug for interactions and side effects. If you find

some of your problems are mentioned, talk it over with your doctor.

Even if they are not mentioned, talk to your doctor. MSA is a

complex

disorder and you must learn to communicate with your doctor, they are

your best bet in getting relief.

Things like dyskinesia are associated with Sinement (levodopa), but

your doctor can possibly find something to help. You also have to

watch what you are taking along with it - are you taking vitamin B6

or an iron pill? Both can affect the levadopa.

At other times you may have to put up with some side effects to give

you relief from the worst symptoms. Charlotte gets dyskinesia from

the levadopa, but without it - she cannot move. That is the tradeoff.

Take care, Bill and Charlotte

---------------------------------------------------------------

> are you taking sinemet? i'm thinking some of my problems are

drug-related.

> nancy spires

[Guest guest]

Dear Thersa,

I see that you did not get many responses yet and I didn't want you to feel

ignored.

I think what you will find is that Shy Drager is a syndrome, and not so much

a specific entity. One gets certain symptoms, they group them together and

call it Shy. If you get a different set of symptoms, they call it OPCA.

Even Spinal Cord injury causes a MSA.(Retrograde corticospinal tract

degeneration and upper motor neuron death after spinal cord injury is a

recognized entity)Presently, the medical establishment is trying to

consolidate some of these syndromes and lump them together under the term

MSA.

Recently I read something in a Japanese study that mentioned increased

signal (MRI)in a certain part of the frontal lobes being a sign of MSA.

I did not know that PET scan was a means of diagnosing SHY Drager. This is

interesting. Did they explain how the PET scan would present if a person

had Shy Drager Syndrome? Are they now using PET scans as a standard means

of diagnosing autonomic disorders? I know that they are using them to

distinguish active brain tumors from inactive tumors.

LOL, I have turned your request around and am now asking you for info.

One other thing I would like to mention. We had a member, I think her name

was Jeanne. She too had ACM and dysautonia. You might want to try to

locate her and maybe she can answer some of your questions concerning the

PET scan.

later and hugs,

cindy

diagnosing question (kinda long)

> Hi .. My name is . I was a member of this group about a year ago

and

> am back with a question. First a short history. I am 36 years old and

have

> been having autonomic problems for about 2 years. I was told by my

> Neurologist that I may have Shy-Drager. I have had a lot of test all of

> which were normal except a Tilt Table Test, Autonomic Nervous System Test,

> and a SPECT scan. Well when the SPECT scan came back with abnormalities I

> was sent for a PET scan and the results were normal. That is when

Shy-Drager

> was ruled out.

>

> So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

> pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

> Malformation, so in May I had the surgery for that. Well the problem is I

am

> still having all the some symptoms that I had before surgery, dizziness,

> passing out (not as much), vision problems, memory problems, etc. etc.

Now

> to the question. Just because the PET scan was normal can that rule out

> Shy-Drager? I am just hoping that we have not missed something. Have any

of

> you had normal PET scan and still diagnosed with Shy-Drager? The results

for

> the SPECT scan were just written off. They have to mean something. Any

> advice would be appreciated. Sorry this is so long.

>

> From South Carolina

> Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

> Nurocardiogenic Syncope

> Pacemaker

> <A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

> here to go to my web page</A>

> http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

>

>

[Guest guest]

Theresa,

I was trying to check with my daughter who also has a Chiari (or syrnix(sp))to

make sure. It is our understanding that it is a cyst on the spine caused by

constant rubbing or pressure. My daughter's is caused by a congenital birth

defect at the base of the skull. While she has been advised not to have

surgery, unless it gets bigger, she was told that once the operation was over

she would still have problems until the cyst went away on it's own after the

pressure was relieved and that it could be a year or more before most of the

symptoms went away. They also told her that there could be some permanent

numbness because of damage to the spinal cord itself.

I may be confused as to which is called which (cyst vs. congenital defect). But

at the time I researched it on the net and found doctors at s Hopkins and at

Washington Univ. Hospital here in Washington, DC doing it. She went to

two doctors and one told her that he would not recommend it. She still has

numbness and some intermittant pain, but has not had the operation. If she has

the operation it will be on the skull itself as well as C1 and possibly C2.

Have the doctors told you it may take some time to go away? Are you following

their instructionsabout rest, therapy, etc?

Take care, Bill and Charlotte

----------------------------------------------------------

wrote:

> Dear Thersa,

>

> I see that you did not get many responses yet and I didn't want you to feel

> ignored.

>

> I think what you will find is that Shy Drager is a syndrome, and not so much

> a specific entity. One gets certain symptoms, they group them together and

> call it Shy. If you get a different set of symptoms, they call it OPCA.

> Even Spinal Cord injury causes a MSA.(Retrograde corticospinal tract

> degeneration and upper motor neuron death after spinal cord injury is a

> recognized entity)Presently, the medical establishment is trying to

> consolidate some of these syndromes and lump them together under the term

> MSA.

>

> Recently I read something in a Japanese study that mentioned increased

> signal (MRI)in a certain part of the frontal lobes being a sign of MSA.

>

> I did not know that PET scan was a means of diagnosing SHY Drager. This is

> interesting. Did they explain how the PET scan would present if a person

> had Shy Drager Syndrome? Are they now using PET scans as a standard means

> of diagnosing autonomic disorders? I know that they are using them to

> distinguish active brain tumors from inactive tumors.

>

> LOL, I have turned your request around and am now asking you for info.

>

> One other thing I would like to mention. We had a member, I think her name

> was Jeanne. She too had ACM and dysautonia. You might want to try to

> locate her and maybe she can answer some of your questions concerning the

> PET scan.

>

> later and hugs,

> cindy

>

> diagnosing question (kinda long)

>

> > Hi .. My name is . I was a member of this group about a year ago

> and

> > am back with a question. First a short history. I am 36 years old and

> have

> > been having autonomic problems for about 2 years. I was told by my

> > Neurologist that I may have Shy-Drager. I have had a lot of test all of

> > which were normal except a Tilt Table Test, Autonomic Nervous System Test,

> > and a SPECT scan. Well when the SPECT scan came back with abnormalities I

> > was sent for a PET scan and the results were normal. That is when

> Shy-Drager

> > was ruled out.

> >

> > So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

> > pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

> > Malformation, so in May I had the surgery for that. Well the problem is I

> am

> > still having all the some symptoms that I had before surgery, dizziness,

> > passing out (not as much), vision problems, memory problems, etc. etc.

> Now

> > to the question. Just because the PET scan was normal can that rule out

> > Shy-Drager? I am just hoping that we have not missed something. Have any

> of

> > you had normal PET scan and still diagnosed with Shy-Drager? The results

> for

> > the SPECT scan were just written off. They have to mean something. Any

> > advice would be appreciated. Sorry this is so long.

> >

> > From South Carolina

> > Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

> > Nurocardiogenic Syncope

> > Pacemaker

> > <A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

> > here to go to my web page</A>

> > http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

> >

> >

[Guest guest]

, I am wondering if you found the answer to your diagnosing questions.

Am wondering how you are doing.

Donna Waggoner in Dallas

diagnosing question (kinda long)

Hi .. My name is . I was a member of this group about a year ago and

am back with a question. First a short history. I am 36 years old and have

been having autonomic problems for about 2 years. I was told by my

Neurologist that I may have Shy-Drager. I have had a lot of test all of

which were normal except a Tilt Table Test, Autonomic Nervous System Test,

and a SPECT scan. Well when the SPECT scan came back with abnormalities I

was sent for a PET scan and the results were normal. That is when

Shy-Drager

was ruled out.

So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

Malformation, so in May I had the surgery for that. Well the problem is I

am

still having all the some symptoms that I had before surgery, dizziness,

passing out (not as much), vision problems, memory problems, etc. etc. Now

to the question. Just because the PET scan was normal can that rule out

Shy-Drager? I am just hoping that we have not missed something. Have any

of

you had normal PET scan and still diagnosed with Shy-Drager? The results

for

the SPECT scan were just written off. They have to mean something. Any

advice would be appreciated. Sorry this is so long.

From South Carolina

Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

Nurocardiogenic Syncope

Pacemaker

<A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

here to go to my web page</A>

http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

[Guest guest]

, I am wondering if you found the answer to your diagnosing questions.

Am wondering how you are doing.

Donna Waggoner in Dallas

diagnosing question (kinda long)

Hi .. My name is . I was a member of this group about a year ago and

am back with a question. First a short history. I am 36 years old and have

been having autonomic problems for about 2 years. I was told by my

Neurologist that I may have Shy-Drager. I have had a lot of test all of

which were normal except a Tilt Table Test, Autonomic Nervous System Test,

and a SPECT scan. Well when the SPECT scan came back with abnormalities I

was sent for a PET scan and the results were normal. That is when

Shy-Drager

was ruled out.

So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

Malformation, so in May I had the surgery for that. Well the problem is I

am

still having all the some symptoms that I had before surgery, dizziness,

passing out (not as much), vision problems, memory problems, etc. etc. Now

to the question. Just because the PET scan was normal can that rule out

Shy-Drager? I am just hoping that we have not missed something. Have any

of

you had normal PET scan and still diagnosed with Shy-Drager? The results

for

the SPECT scan were just written off. They have to mean something. Any

advice would be appreciated. Sorry this is so long.

From South Carolina

Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

Nurocardiogenic Syncope

Pacemaker

<A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

here to go to my web page</A>

http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

[Guest guest]

Donna and ,

First, decompressing a Chiari does not ALWAYS mean it will go away. It is a

cyst caused by a congenital defect (usually) causing pressure and rubbing on the

spinal cord. After the operation it can take sometime for the cyst to go away

still. So it could still be the Chiari. They cause many of the same type of

problems as MSA.

There is still no 100% test for MSA or SDS. In addition there may be a question

here of what people are calling what. Most doctors do not still use Shy-Drager

and use MSA. Even if it is not the old SDS, it could still be MSA-C or MSA-P.

It is best at this point to wait and see. If it does not get worse - it was

probably the Chiari. If the conditions continue to get worse, they can do

another MRI to see if the Chiari has gotten worse. If not, it could still be

the Chiari, MSA, MSA-C or MSA-P (or even something else).

We are not dealing with an exact disease here, we are dealing with a set of

symptoms.

Take care, Bill and Charlotte

-----------------------------------------------------------------------------

" Waggoner, Donna " wrote:

> , I am wondering if you found the answer to your diagnosing questions.

> Am wondering how you are doing.

>

> Donna Waggoner in Dallas

>

> diagnosing question (kinda long)

>

> Hi .. My name is . I was a member of this group about a year ago and

> am back with a question. First a short history. I am 36 years old and have

>

> been having autonomic problems for about 2 years. I was told by my

> Neurologist that I may have Shy-Drager. I have had a lot of test all of

> which were normal except a Tilt Table Test, Autonomic Nervous System Test,

> and a SPECT scan. Well when the SPECT scan came back with abnormalities I

> was sent for a PET scan and the results were normal. That is when

> Shy-Drager

> was ruled out.

>

> So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

> pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

> Malformation, so in May I had the surgery for that. Well the problem is I

> am

> still having all the some symptoms that I had before surgery, dizziness,

> passing out (not as much), vision problems, memory problems, etc. etc. Now

> to the question. Just because the PET scan was normal can that rule out

> Shy-Drager? I am just hoping that we have not missed something. Have any

> of

> you had normal PET scan and still diagnosed with Shy-Drager? The results

> for

> the SPECT scan were just written off. They have to mean something. Any

> advice would be appreciated. Sorry this is so long.

>

> From South Carolina

> Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

> Nurocardiogenic Syncope

> Pacemaker

> <A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

> here to go to my web page</A>

> http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

>

>

[Guest guest]

Donna and ,

First, decompressing a Chiari does not ALWAYS mean it will go away. It is a

cyst caused by a congenital defect (usually) causing pressure and rubbing on the

spinal cord. After the operation it can take sometime for the cyst to go away

still. So it could still be the Chiari. They cause many of the same type of

problems as MSA.

There is still no 100% test for MSA or SDS. In addition there may be a question

here of what people are calling what. Most doctors do not still use Shy-Drager

and use MSA. Even if it is not the old SDS, it could still be MSA-C or MSA-P.

It is best at this point to wait and see. If it does not get worse - it was

probably the Chiari. If the conditions continue to get worse, they can do

another MRI to see if the Chiari has gotten worse. If not, it could still be

the Chiari, MSA, MSA-C or MSA-P (or even something else).

We are not dealing with an exact disease here, we are dealing with a set of

symptoms.

Take care, Bill and Charlotte

-----------------------------------------------------------------------------

" Waggoner, Donna " wrote:

> , I am wondering if you found the answer to your diagnosing questions.

> Am wondering how you are doing.

>

> Donna Waggoner in Dallas

>

> diagnosing question (kinda long)

>

> Hi .. My name is . I was a member of this group about a year ago and

> am back with a question. First a short history. I am 36 years old and have

>

> been having autonomic problems for about 2 years. I was told by my

> Neurologist that I may have Shy-Drager. I have had a lot of test all of

> which were normal except a Tilt Table Test, Autonomic Nervous System Test,

> and a SPECT scan. Well when the SPECT scan came back with abnormalities I

> was sent for a PET scan and the results were normal. That is when

> Shy-Drager

> was ruled out.

>

> So I was sent to a neurosurgeon and had a Mylogram CT done. (I have a

> pacemaker so can't have a MRI.) The Mylogram showed that I had Chiari

> Malformation, so in May I had the surgery for that. Well the problem is I

> am

> still having all the some symptoms that I had before surgery, dizziness,

> passing out (not as much), vision problems, memory problems, etc. etc. Now

> to the question. Just because the PET scan was normal can that rule out

> Shy-Drager? I am just hoping that we have not missed something. Have any

> of

> you had normal PET scan and still diagnosed with Shy-Drager? The results

> for

> the SPECT scan were just written off. They have to mean something. Any

> advice would be appreciated. Sorry this is so long.

>

> From South Carolina

> Chiari & Cervical Stenosis at C5 & 6 (decompressed 5/26/00)

> Nurocardiogenic Syncope

> Pacemaker

> <A HREF= " http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html " >Click

> here to go to my web page</A>

> http://hometown.aol.com/dizzyinsc98/Chiari-autonomic.html

>

>