BILL & ANNE Re: Digestive problems, (J and G) Tubes, help - input want

[Guest guest]

HI BILL

PAF is Pure Autonomic Failure which is only one part of MSA. YEP. I

WAS REMINDED OF THAT WHEN I READ A POST - THINK IT WAS FROM VERA...

SEEMS I FORGET NEARLY EVERYTHING LATELY. :0)

Anne is in Australia and ... I will ask her to write you when I hear

from her. THANKS. I'D APPRECIATE YOU DOING THAT.

Chiari does have many of the same symptoms as MSA and could be the

cause. Note that there is an operation for that. YES, I KNOW, AND I

ALSO KNOW THAT ONE CAN HAVE BOTH. I HAVE ALSO BEEN INFORMED THAT

SHOULD THIS BE THE CASE, THERE ARE RISKS INHERENT WITH THE SURGERY,

AND THAT THERE ARE CASES WHERE MULTIPLE SURGERIES OCCUR (VISITED A

SITE THE OTHER NIGHT). IN ANY CASE, I'M NOT CONCERNED. NOT NEAR AS

CONCERNED AS I WAS. MAKING PLANS, AND IF THINGS GET BETTER - WE'LL

BE NONETHEWORSE - IF THEY CONTINUE TO GET WORSE - THE PLANS WILL HELP.

Dehydration is a problem with MSA due to deterioration of the

swallowing muscles. Because the muscles are somewhat 'tired' they do

not want to work as hard as normal and liquids are the most difficult

to swallow. Therefore the patient unconscously drinks less

water/liquids and saves energy for food. Too little liquids cause

dehydration (and infection). INTERESTING. I'VE BEEN HAVING TROUBLES

SWALLOWING, WHICH ARE GETTING PROGRESSIVELY WORSE - BUT MY MAIN

PROBLEMS SEEM TO BE WITH SWALLOWING " SOLID " FOOD, SO I'VE

(UNCONSCIOUSLY) GONE TO PRETTY MUCH PUREE STYLE FOOD(S). HAVEN'T

NOTICED ANY PROBLEMS SWALLOWING LIQUIDS.

Sounds to me as if your internist is still trying to rule everything

out. Stick with them, that is the best type of doctor to have in a

case like this. YEP. I KNOW. WE HAD A GOOD HEART-TO-HEART A COUPLE

OF MONTHS AGO. SHE AGREED TO STICK WITH ME, AND I'M SURE IT'S A

MUTUALLY BENEFICIAL ARRANGEMENT. I DON'T INTEND TO LET HER GO

THOUGH - BECAUSE SHE HAS TRULY KEPT TRYING TO HELP ME WORK THROUGH

THIS. TOGETHER, WE MIGHT JUST FIGURE SOMETHING OUT. WHAT IS REALLY

NEAT, IS THAT SHE'S NOT " STUCK " ON WESTERN MEDICINE EITHER, QUITE

HOLISTIC, WHICH IS QUITE UNIQUE FOR SPECIALTY DOCS. DON'T WORRY.

I'M WELL-PLEASED, AND INTEND TO STICK WITH HER NO MATTER WHAT. FROM

MY PERSPECTIVE - WHAT OTHER CHOICE DO I HAVE? SHE'S A CHRISTIAN TOO -

WHICH IS A REAL BOOST, AND HAS SUFFERED FROM FIBROMYALGIA, SO SHE

HAS A SOFT SPOT FOR THOSE WITH DIFFICULT TO DIAGNOSE CONDITIONS. SHE

WILL BE THE FIRST TO ADMIT THOUGH - I'M A NEW BOOK EVERY TIME SHE

SEES ME :-) JUST GOES TO SHOW - THERE'S ALWAYS SOMETHING MORE TO

LEARN OUT THERE.

THANKS FOR THE POST, AND ENCOURAGEMENT.

PAUL