>BILL - Re: Amantadine and Decreased BP or weight?

[Guest guest]

HI BILL. THANKS FOR THE RESPONSE.

Weight loss in MSA is normally from eating less. In your case it may

be the stomach shutting down (gasteoparesis -sp). There is a test

they can do to see if the stomach is performing correctly.

WELL, THEY RAN THOSE TESTS BEFORE AND DURING MAYO. ACCORDING TO THE

GI DOC, EVERYTHING WORKED FINE. OF COURSE, ACCORDING TO THE SAME

DOC, THERE WAS NOTHING NEUROLOGICAL THAT COULD EXPLAIN ALL THE

SYMPTOMS I WAS (AM) EXPERIENCING. HE WAS DEFINITELY WRONG ON THAT

COUNT, AS PROVEN BY ONE OF HIS COLLEAGUES AT MAYO IN THE NEUROLOGY

DEPARTMENT. HE COULD BE WRONG ON THIS COUNT AS WELL. MY INTERNIST

BELIEVES THAT THERE ARE INDEED TIMES THAT MY DIGESTIVE TRACT WORKS,

AND TIMES WHEN IT DOES NOT. INDEED, MY DIGESTIVE SYSTEM VARIES FROM

DAY TO DAY, OR CAN EVEN VARY FROM PART OF A DAY TO ANOTHER. I

BASICALLY NEVER KNOW WHAT IT'S GOING TO DO – SO I CAN'T PLAN.

This seems to be an effect of autonomic failure as far as I can tell

as Anne Pledger had that problem and got a stomach pacemaker to help

her digest food. It is working for her. WELL, THAT WOULD BE BETTER

THAN A J-TUBE. DO YOU KNOW WHERE SHE WAS ASSESSED? OH… THAT'S

RIGHT. IF I REMEMBER CORRECTLY, SHE'S FROM ANOTHER COUNTRY? HAVE

YOU HEARD FROM HER? LAST I HEARD YOU SAID SHE HAD THE FLU OR

SOMETHING.

In Charlotte's case it was eating less due to swallowing

difficulties. WELL, THIS MAY BE THE CASE AS WELL. I DON'T KNOW.

PERHAPS I'M NOT EATING MUCH – AS A NATURAL RESULT OF HAVING INCREASED

DIFFICULTY SWALLOWING. I SIMPLY DON'T KNOW.

You need to start keeping a log of your daily intake of food and

liquids. YES I DO. BEING IN A BEHAVIORAL SCIENCE, YOU WOULD THINK I

WOULD DO THIS ALREADY, BUT I'M TIRED. I'VE TRACKED AND TRACKED AND

CAN'T COME UP WITH CORRELATIONS, SO I QUIT TRACKING. EVERY ONCE IN A

WHILE I'LL CHECK A READING – JUST TO SEE HOW I'M DOING. BUT NOT TOO

ROUTINELY ANYMORE. PLUS… WHEN I DO TRACK SUCH THINGS, THE DOCS LOOK

AT ME LIKE I'M SOME SORT OF AN OBSESSIVE-COMPULSIVE INDIVIDUAL AND

THEY THEN SHRUG EVERYTHING OFF AS ME BEING OVERLY CONCERNED ABOUT MY

BODILY FUNCTIONS. AT LEAST THERE HAS ALWAYS BEEN AMPLE THAT THEY

COULD NOT JUST `EXPLAIN AWAY' – PLENTY OF GOOD OLE PHYSICAL EVIDENCE –

THE KIND THAT MAKES THEM FEEL AS HELPLESS AS ME.

Add in your daily temperature and BP - we always checked BP and

temperature OH. MY TEMP GOES ALL OVER THE PLACE. TYPICALLY

BELOW `NORMAL'. IF I GET A FEVER – WHICH SEEMS TO HAPPEN FAIRLY

ROUTINELY – THEN JUST A 99 DEGREE TEMP CAN MAKE ME FEEL MISERABLE

(BUT I THINK I'M EVEN GETTING USED TO THOSE).

just before Charlotte got up (still reclining) and immediately after

she sat up on the edge of the bed. That gave us a baseline to work

from. SOUNDS GOOD.

As she got more into the disorder, I kept a food and drink log also,

and made up any shortage of nutrients with various supplements such

as Ensure, Jeveity, or even Slimfast. DUE TO MILK INTOLERANCE, I USE

THE SOY SLIMFAST AS A SUPPLEMENT. IN FACT, I MAKE A SPECIAL

CONCOCTION DAILY WITH IT. THAT IS ONE WAY I ENSURE I AM GETTING

ADEQUATE NUTRIENTS. INTERESTINGLY, MY NUTRIENT LEVEL OF MY BLOOD HAS

ALWAYS BEEN WITHIN LIMITS (MY WBC CAN DROP TO 2.8, BUT NUTRIENTS SEEM

FINE). I HAVE ADEQUATE PROTEIN, B6, B12, EVEN IRON. THE LATTER IS

REAL INTERESTING, AS MAYO SAID THEY'D GIVE ME A DIAGNOSIS OF ANEMIA

OF CHRONIC DISEASE – BUT THEY SAID THEY DIDN'T KNOW WHAT THE CHRONIC

DISEASE WAS.

She was almost always short of calcium and that can be made up with

a Tums or two. NOT SURE ON THAT ONE. I KNOW MY BONE MARROW TEST

INDCATED SOMETHING ABOUT CALCIUM BEING DEPLETED,BUT IT SHOWED MORE

STUFF THAN JUST THAT. MOST OF MY TESTS THREW AT LEAST ONE UNEXPECTED

RESULT – BUT… THEY HAD NO IDEA HOW TO INTERPRET IT.

You also need to make sure you are getting enough protein as it helps

the body do it's normal thing. Sixty five grams of protein seems to

be a minimum, ACTUALLY, THAT IS THE AMOUNT FOR A NURSING MOTHER.

NORMAL RDAs ARE 50 – BUT THEN AGAIN – WE'RE NOT `NORMAL' ARE WE? :0)

But you may need to get a dietician consult to learn more about

that. WELL, AMONG OTHER THINGS, I'VE STUDIED THAT AS WELL. THAT'S

HOW I KNEW THE NUMBER – IT'S IN MY NEARLY 1000 PAGE NUTRITION TEXT

BOOK. MAY HAVE CHANGED SOME IN THE PAST FEW YEARS, BUT DOUBT IT

CHANGED MUCH.

The doctor can prescribe that and get your insurance to pay for it.

AH… IF I HAD INSURANCE, BUT YOU SEE, BEFORE ALL THIS SET IN – I WAS

ALREADY UNINSURABLE. BUT, DON'T WORRY – WE'VE BEEN WELL TAKEN CARE

OF BY GOD AND HIS SERVANTS – QUITE LITERALLY.

If not, the next time you are in the hospital NEXT TIME?!?! I DON'T

WANT THERE TO BE A NEXT TIME. CAN'T I JUST SAY " NO " ? J

ask to speak to the dietician there as part of your discharge

planning. WELL, I SAW THE DIETICIAN AT MAYO. SHE COULDN'T TELL ME

MUCH. I WAS ALREADY DOING MUCH RIGHT. PLUS, THE DOC WANTED ME ON A

HIGH SALT DIET – BECAUSE OF THE VERY MINIMAL SALT COMING OUT IN MY

URINE. HOWEVER, THE DIETICIAN AGREED THAT I WAS ALREADY ON A HIGH

SALT DIET! AIN'T THAT GREAT?!

Note that discharge planning can be a great source of help for MSA

patients and you should insist on it anytime you are in the hospital.

USUALLY, THEY'RE JUST HAPPY TO SEE ME LEAVE. SEEMS THEY REALLY

HAVEN'T LIKED THE DIFFICULT TO SOLVE CASES WHERE I'VE BEEN. NOT THAT

THEY DIDN'T LIKE ME – ALL JOKING ASIDE. THEY SAID I WAS A GREAT

PATIENT. I THINK THEY WERE JUST FRUSTRATED THEMSELVES (AT

THEMSELVES?)

At worst they should have a nurse who has some experience in

discharge planning, and better hospitals have a trained person in

discharge planning who can help you arrange everything you need for

home care. WELL, SO FAR, BE IT ST. JOHNS IN TULSA OR BAPTIST

REGIONAL IN MIAMI OR MAYO IN ROCHESTER… IT'S ALL BEEN THE SAME.

HARDLY ANYTHING SAID WHEN I LEFT. IN FACT, THE BEST TREATMENT I GOT

WAS THE HOSPITAL IN MIAMI – AND THAT WAS OKLAHOMA – NOT FLORIDA! J

Take care, Bill Were

THANKS. YOU TOO.

NOT SURE IF I GOT ALL MY RESPONSES IN HERE OR NOT. BUT… I'VE HAD

ENERGY ALL DAY. DID TAKE A LATE SIESTA – BUT I'M POOPED – AND MY

CHEST HURTS.

HAVE A GOOD NIGHT – OR MORNING – WHENEVER IT IS YOU'RE READING THIS J

ADIOS FOR NOW.

PABLO AKA PULA AKA PSYCHO AKA PAUL

[Guest guest]

,

Unfortunately, you will need the ER at a hospital at some point. Infection will

rear it's ugly head again and in spite of the ER shortcomings, they seem to be

the best bet for infection treatment. The hospital near us just rehydrated

Charlotte the first time and sent her home without checking for infection. Less

than 10 days later, I was calling 911 to get her into a different hospital where

they found the infection (septis by then). I wrote a letter about the ER at the

hospital near us and ever since they know about MSA.

Take care, Bill Werre