Re: [MSA]

[Guest guest]

Hi. Just saw ur emaila dn quick response for now . have u looked at ndrf

site for the disease u are speaking of below.

http://www.ndrf.org/autonomic_disorders.htm

nancy m.

aletta mes wrote:

>

> Still hanging in, thanks for keeping me in your thoughts. It helps.

> Still have not spoke to one doctor about my son (no time, they tell

> me), maybe tomorrow. No movement anywhere (bowels incl. LOL). Keep

> forgetting to eat and take meds, so used to meals and stuff being part

> of the structure of being a mom. My mother isn't speaking to me (I

> guess she quit taking meds). My sister's being sweet but with

> full-time job and five kids and another on the way, can't expect much

> time. My mother in law is very sweet and supportive (Naples FL), and

> the X and I speak daily. Son's god-father called to. Unfortunately

> they're on the other side of the continent. Coathanger pain galore

> (to much time spent upright and unsupportive).

>

> Guess I chose the wrong time to quit smoking, huh?LOL

>

> Letters I emailed to Church etc. are slowly being responded to. But,

> I still know very few details about what really happened. Hope to

> speak to my parish priest tomorrow, he responded very quickly (as is

> his nature), but I was at the hospital when he called. My friend

> who lives upstairs came down last night and we chatted till

> about 4 am or so.

>

> Anyone have any info on this: Inherited Dysautomania listed as a

> 'Jewish " (Askenasi Jews in particular) disease, matches me in some

> ways better than MSA (breech births - mine, my son's), swallowing

> problems, childhood pneumonia (6 times before age 20) inability to

> cry, (have been called insensitive all my life), some other things

> which escape me right now. I'm a total mut with lots of 'bastards' on

> both sides of the family (including Paiute, Maori, Flemish, Dutch,

> Spanish). There is a genetic test for it, but they keep saying

> 'Jewish' on these websites as though it is an absolute requirement.

> In Vancouver we have no Jewish hospital (my kids were both born at Mt.

> Sinai in Toronto). Not that there is a cure, but it has been

> identified as a genetic defect.

>

> aletta mes, vancouver, bc canada

> http://www.aletta.0catch.com

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

[Guest guest]

Ray,

Are you doing better today?

Jean (phx)

[Guest guest]

Greeting Jim & Peg!

I hope both of you are well. To answer your question: Yes, Tylenol can

be fatal in severe over dosage. Please see:

http://rxlist.com/cgi/generic/apap_od.htm

For product warnings:

http://rxlist.com/cgi/generic/apap_wcp.htm#W

However, in normal dosages, it is not a problem.

And I suspect there is inadequate scientific information to

> But is Tylenol dangerous in small doses?

NO! It is safe as directed.

> I don't think anyone knows for sure ...

Oh yes, they do know. Double blind studies were required before this

was released into the market place.

Folks, I tell my kids this all the time: " Just because you say so,

doesn't mean it is true! You must LEARN the truth, read, research, and

examine the evidence. "

And what evidence do we have that it is safe: Hospitals use it, doctors

use it, and millions of people use it. We use it will no ill effect.

Saying it is true, does not make it true !!!

> but since Tylenol works against the production of glutathione

> and if not enough glutathione is being produced and there is an

> alternative to Tylenol that could be used in its place - why

> take the chance?

What's the proof of this statement? I was unable to find anything this

is the case. It may well be true, but ask a pharmacist. They my need

to talk with a pharmacologist. However, since it can damage the liver

if an over dosage occurs, it would stand to reason that all liver

functions would be diminished. But at normal dosages, as directed? I

doubt it.

Please note if used continuously, Tylenol can lead to an over dosage.

At least that is my understanding. Aspirin also leads to other health

problems. Long term management of pain can be better addressed with

medications, such as Ultram. (But watch possible increase of OH

problems and other side effects).

http://rxlist.com/cgi/generic/tramadol.htm

Sure taking no medication is better than taking it. Wouldn't it be nice

if as patients we did not have to take any medication. We might even be

healthy. Would it be nice.

But in reality, our medical community tries to carefully develop

medications that help us survive. With medications I can continue to

work. Without it I would be severely disabled. The constant tingling,

cramping, pain, brain fog, and problems with sleep would render me a

curled up miserable person. I use medications only to improve my

quality of life. I would love to share my symptoms with idiots who do

not have any of them. Believe me, once they experienced it, they would

PLEAD for the very same medications they decry.

Anyway, I get off my soapbox.

Regards,

=jbf=

B. Fisher

[Guest guest]

Greeting Jim & Peg!

I hope both of you are well. To answer your question: Yes, Tylenol can

be fatal in severe over dosage. Please see:

http://rxlist.com/cgi/generic/apap_od.htm

For product warnings:

http://rxlist.com/cgi/generic/apap_wcp.htm#W

However, in normal dosages, it is not a problem.

And I suspect there is inadequate scientific information to

> But is Tylenol dangerous in small doses?

NO! It is safe as directed.

> I don't think anyone knows for sure ...

Oh yes, they do know. Double blind studies were required before this

was released into the market place.

Folks, I tell my kids this all the time: " Just because you say so,

doesn't mean it is true! You must LEARN the truth, read, research, and

examine the evidence. "

And what evidence do we have that it is safe: Hospitals use it, doctors

use it, and millions of people use it. We use it will no ill effect.

Saying it is true, does not make it true !!!

> but since Tylenol works against the production of glutathione

> and if not enough glutathione is being produced and there is an

> alternative to Tylenol that could be used in its place - why

> take the chance?

What's the proof of this statement? I was unable to find anything this

is the case. It may well be true, but ask a pharmacist. They my need

to talk with a pharmacologist. However, since it can damage the liver

if an over dosage occurs, it would stand to reason that all liver

functions would be diminished. But at normal dosages, as directed? I

doubt it.

Please note if used continuously, Tylenol can lead to an over dosage.

At least that is my understanding. Aspirin also leads to other health

problems. Long term management of pain can be better addressed with

medications, such as Ultram. (But watch possible increase of OH

problems and other side effects).

http://rxlist.com/cgi/generic/tramadol.htm

Sure taking no medication is better than taking it. Wouldn't it be nice

if as patients we did not have to take any medication. We might even be

healthy. Would it be nice.

But in reality, our medical community tries to carefully develop

medications that help us survive. With medications I can continue to

work. Without it I would be severely disabled. The constant tingling,

cramping, pain, brain fog, and problems with sleep would render me a

curled up miserable person. I use medications only to improve my

quality of life. I would love to share my symptoms with idiots who do

not have any of them. Believe me, once they experienced it, they would

PLEAD for the very same medications they decry.

Anyway, I get off my soapbox.

Regards,

=jbf=

B. Fisher

[Guest guest]

Just a matter of instinct perhaps. I asked last year

for my doctor to change me from Tylenol 3's to 292's (changing tylenol to

aspirin), and although I'm not sure why my irregular heartbeat is less

irregular. This way I cannot forget my daily aspirin to counter

clots and heart attacks.

At Saturday 5/18/02 03:14 AM, you wrote:

We were interested in the following

quote with the reference to tylenol. Peg

prefers tylenol (both regular and tylenol III) as a pain killer. I'm

not

sure of the implications of the statements being made here.

Does anyone have some additional insights about the use of tylenol by

MSA

patients?

Peg and Jim from Guam

aletta mes

vancouver, bc Canada

web:

http://aletta.0catch.com

[Guest guest]

:

In spite of your admonition not to say they can only be sure on

autopsy, that is what I am going to say. My husband was diagnosed with

Shy-Drager Syndrome about eight years before he died. His BP varied all over

the place. If he stood up suddenly, it would drop to 60/30 or less and he

would pass out. Once he was out for over 15 minutes. At night, even with his

head elevated, it always went to 200/110. He took all the drugs that are

prescribed for SDS with pretty good results. He had been diagnosed with PD

about 12 years before the SDS diagnosis, and he had Dementia that had

symptoms different from those usually associated with Alzheimer's or

Parkinson's.Aricept controlled the Dementia. We had a Neurologist who was

willing to try different treatments and not worry of they fit any particular

diagnosis. Because he had most of the symptoms discussed here, we put

Shy-Drager and PD on Ken's death certificate and shipped his brain tissue to

Mayo. Imagine everyone's surprise when the report came back that he had PD

and Diffuse Lewy Body Disease and not a sign of any of the MSA syndromes. I

called and spoke with Dr. Parisi about this, and he said the lewy bodies were

all through his brain and that this was probably what caused the SDS symptoms

in Ken's case. So, you see, the actual diagnosis is not the important thing.

It is finding a doctor who will try different treatments geared to the

symptoms the patient displays.

Good Luck to you both,

Love, Barbara

[Guest guest]

,

Sorry you're havning such a difficult time getting a

dx. I gather that MSA is very difficult to dx except

through autopsy.

My father had MSA (we think...we're awaiting autopsy

results) and didn't have the BP problems typical with

MSA patients. He had all the other symptoms you

mentioned and then some.

Good luck to you. Hope you get some answers soon.

in OK

--- Yates/SIH diana.yates@...> wrote:

> Hello Everyone: Me again

>

> After two years of running to any doctor who would

> listen we are completely

> exhausted. My husband was diagnosed by

> Hospital in St. Louis, MO

> with MSA (Neurologist Diagnosed him). THe

> neurologist added that it was

> really to early for all the signs to appear.

> Soooooooooooooooo I took my

> husband to another physician who supposedly

> specialized in MSA in

> Springfield , IL. Well guess what that specialist

> says NO to MSA because

> the only symptom that my husband doesn't have YET

> out of the list is low

> blood pressure. The Springfield Dr. says some form

> of ATAXIA?????? When I

> asked for more specifics of course I was treated

> like I had four eyes.

> Now my husband has had to go back to his family

> doctor for his eyelids not

> wanting to stay open, pain in his legs, not being

> able to get from a

> sitting position to a standing position and

> bowel/urine incontinence.

>

> Seems like I only email this group when I have gone

> to my limit. Any

> suggestions? We see the Neurologist in Springfield

> this Thursday again.

> Wish there was a pill for my husband to take to make

> this all so much

> better. If anything I am totally frustrated with

> wondering does he have it

> or does he not. Please do not come back and say

> well autopsy is the only

> definite way of telling. We had one Dr that we

> walked out on because he

> told my husband, " If you would allow me to autopsy

> your brain I would be

> able to tell you. " Needless to say we haven't gone

> back to that Physician.

>

> Hugs

>

> Yates, CPC

> Office of Corporate Compliance

> Southern Illinois HealthCare

> Compliance Auditor

> 1239 E Main

> Carbondale, IL 62901

> Ex: 67037

> Fax: 618 -351-6380

>

>

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

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>

[Guest guest]

, I am sorry this is happening. My mother Joyce (71, died 11/5/00)

never had BP problems and we believe she had MSA. She had Parkinsonian

symptoms as well as the urinary/bowel incontinence. Good luck, Debbie

[Guest guest]

Diane,

I and all on the lsit, I am sure, hear the frustration in your words. It must be just as bad on the caregivers as on the patient to be saddled with this most perplexing disorder.

I can only speak from my experience and feelings. I've been on this list for a couple of years although I go through periods of inactivity in keeping up with all the posts. But it seems to me that the two medical centers in the US that are the most well equipped to dx MSA are at Mayo Clinic and Vanderbilt. I'm sure the are others but enough patients on this list have been to these two centers (myself to Mayo) to know they are among the best.

You will probably never get the kind of definitive diagnosis we'd all like to have. MSA just doesn't fit neatly into any single category. I received a dx of MSA and I do not have OH (low blood pressure). ThaT says how complex it is to sort out the symptoms and apply them to each individual case. After returning to my home in Virginia from Mayo in Rochester and knowing I could not continue going there for followup visits, I was lucky to find a neuro within 40 miles who is familiar with disorders of the autonomic nervous system. He accepts the dx from Mayo and treats me for symptom management which is all I can hope for at this time.

Most of us with MSA have all the symptoms of your husband that you mentioned and a few more to boot. Nothing surprises. We deal with them as they appear. That is where this list comes to the rescue. There is not one symptom that you will encounter that hasn't been dealt with by someone here..........and he/she will most certainly be willing to share with you how it was dealt with. Even though I have great confidence in my local neuro, he does not have the time or expertise to deal with the nitty-gritty of all these irritating symptoms. I have a local family practice doctor who I see every three months just before my neurologist. Although she knew little of MSA before my case, she is great about allowing me to bring her info I have taken off this site about MSA. She deals with my ever worsening symptoms and knows they will worsen over time. That's where the wonderful people on this list come in to help.........and do they help!!!!!

I know nothing anyone can say will ease your frustration and impatience with the current situation. I prAY that you will find some answers and eventually a measure of peace.

LOVingly Barbara Pond in SWVA