Confused about my Diagnosis!

[Guest guest]

I am very confused about my Diagnosis of MSA/PSP. I went to Mass

General Hospital last month per the request of my local neurologist. After

a very thorough exam and an hour long discussion by the resident and the

specialist and a medical student who was observing the discussion, it was

determined that I did not have Parkinsons but a Parkinson's Plus called

Multiple System Atrophy/a nd to make it worse the said Progressive

Supranuclear Palsy. Is it possible to have a dual DX such as this? I

have a background in nursing and have also done alot of research on the

internet since my husband and I left there in a state of shock and

without any reading material given to us.

We were told if we had any questions to call them but it is almost

impossible to get them to answer my phone calls.

In fact, we are going to see my local neurologist on

9/25 since he called me at home the other evening to check on how I

was doing and to tell me that he had finally received the report from MGH.

If anyone out there has a similar diagnosis I would love to hear from you.

This all started a year ago

while in the hospital for gallstone pancreatitis. I apparently went

cyanotic and and my PCP found me and brought me around. I then

experienced a seizure. The next thing I knew was

that I awoke in the SCU and didn't remember even going to the hospital

like a week before due to the problems I was having with my abdomen. Well

needless to say it has been an eventful year which I remember some of and

alot of that I don't. I don't feel as if it is dementia but a loss of my

memory for about 18 - 24 months previous to this hospitalization. I am

told that this is quite normal not to rememer due to the diffuse brain

injury from the lack of oxygen that I sustained. Please if anyone can

shed some light on this I would appreciate it very much.

Thanks, Anne

[Guest guest]

Hi Anne,

It's possible but would be extremely rare. It's more likely that you

misheard the doctor. He may have said it could be EITHER Multiple System

Atrophy OR Progressive Supranuclear Palsy. They are VERY similar in

symptoms. Both are considered Parkinson Plus Disorders and would be

extremely difficult to tell apart especially early on.

To get you started with information here are some articles that might help:

Parkinson's Plus Syndromes

http://emedicine.com/neuro/topic596.htm

Progressive Supranuclear Palsy

http://www.emedicine.com/neuro/topic328.htm

Multiple System Atrophy

http://www.emedicine.com/neuro/topic671.htm

Take care,

Pam

Confused about my Diagnosis!

I am very confused about my Diagnosis of MSA/PSP. I went to Mass

General Hospital last month per the request of my local neurologist. After

a very thorough exam and an hour long discussion by the resident and the

specialist and a medical student who was observing the discussion, it was

determined that I did not have Parkinsons but a Parkinson's Plus called

Multiple System Atrophy/a nd to make it worse the said Progressive

Supranuclear Palsy. Is it possible to have a dual DX such as this? I

have a background in nursing and have also done alot of research on the

internet since my husband and I left there in a state of shock and

without any reading material given to us.

[Guest guest]

Anne,

Just to add to what Pam said, I noticed you were seen at MGH. Do you live

in the Boston area? We have a local support group that meets every couple

of months, usually at Beth Israel Deaconess Hospital. Our next meeting in

on October 17. If you are interested I would be happy to send you more

details.

Carol & Rob

Lexington, MA

Confused about my Diagnosis!

>

>

> I am very confused about my Diagnosis of MSA/PSP. I went to Mass

> General Hospital last month per the request of my local neurologist.

After

> a very thorough exam and an hour long discussion by the resident and

the

> specialist and a medical student who was observing the discussion, it was

> determined that I did not have Parkinsons but a Parkinson's Plus called

> Multiple System Atrophy/a nd to make it worse the said Progressive

> Supranuclear Palsy. Is it possible to have a dual DX such as this? I

> have a background in nursing and have also done alot of research on the

> internet since my husband and I left there in a state of shock and

> without any reading material given to us.

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

Anne,

It is VERY hard to distinguish between MSA and PSP especially in early

stages. They both cause the same type of problems and only differ in

what causes the brain cells to die. Both have about the same type of

treatment (treat the symptoms) so I would not worry about the diagnoses

as long as they are trying to treat the symptoms. Exercise will help

slow muscle problems in both.

Take care, Bill Werre

==============================================

Philip Amoroso wrote:

>I am very confused about my Diagnosis of MSA/PSP. I went to Mass

>General Hospital last month per the request of my local neurologist. After

>a very thorough exam and an hour long discussion by the resident and the

>specialist and a medical student who was observing the discussion, it was

>determined that I did not have Parkinsons but a Parkinson's Plus called

>Multiple System Atrophy/a nd to make it worse the said Progressive

>Supranuclear Palsy. Is it possible to have a dual DX such as this? I

>have a background in nursing and have also done alot of research on the

>internet since my husband and I left there in a state of shock and

>without any reading material given to us.

>We were told if we had any questions to call them but it is almost

>impossible to get them to answer my phone calls.

>In fact, we are going to see my local neurologist on

>9/25 since he called me at home the other evening to check on how I

>was doing and to tell me that he had finally received the report from MGH.

>If anyone out there has a similar diagnosis I would love to hear from you.

>This all started a year ago

>while in the hospital for gallstone pancreatitis. I apparently went

>cyanotic and and my PCP found me and brought me around. I then

>experienced a seizure. The next thing I knew was

>that I awoke in the SCU and didn't remember even going to the hospital

>like a week before due to the problems I was having with my abdomen. Well

>needless to say it has been an eventful year which I remember some of and

>alot of that I don't. I don't feel as if it is dementia but a loss of my

>memory for about 18 - 24 months previous to this hospitalization. I am

>told that this is quite normal not to rememer due to the diffuse brain

>injury from the lack of oxygen that I sustained. Please if anyone can

>shed some light on this I would appreciate it very much.

>Thanks, Anne

>

>

>

>If you do not wish to belong to shydrager, you may

>unsubscribe by sending a blank email to

>

>shydrager-unsubscribe

>

>

>

>

>