Brine - body temp; Marg (Canada);

[Guest guest]

Other illnesses also can have similar effects on body temp, but having

compared notes (my mother has diabetes and a friend with PV), there is with

neurological illness one difference, it idoes not necesarily have a cause

or stimulous, it does pallmall whatever it likes. My mother can avoid

certain activities or adjust the temperature, that does me not one iota of

good. Damnable, because I cannot adjust lifestyle to avoid temperature

problems, it will do as it may. Their problems aslo have more to do with

cold extremities and swollen hands and feet, where the core temp remains

constant. Not mine my temps has been verified to go to 102 down to 94 and

back within and hour. I've worn a thick mohair sweater on a day it was

over 80F outside, yet I had gooseflesh. I am very good at taking in more

than adequate amounts of water (the brain feeling dehydrated can result in

autonomic disturbances). I know I am too warm when I feel nauseated and

faint, without fail cooling myself down improves functioning. I think it

was the Japanes who have done studies of cooling suits (astronaut variety)

on patients with MS, which did improve functioning, neurons are more active

in a cooler - but not cold - body. I came across that when the prevaling

idea was that I had MS, but the little tricks I taught myself to cool have

helped me not be bedridden and remain independent.

Lots of sensations are experienced wrongly, never know if I need to use the

bathroom or not, just have to stick to the schedule. Some times I feel

constant urgency no matter what and other times no need at all, even after

taking in a lot of liquids. I am never hungry, thirsty, sleepy. Schedules

for all these things are posted all over the apartment and many alarms

set. I complained to the doctor I felt horribly full much of the time even

though I ate little, X-ray showed no impactions or anything else of concern

- just another false feeling. I use a tape measure to determine if I am

actually distended or just feel that way. I honestly cannot answer " how do

you feel? " , I don't know. If someone tells me it is cold - I have to

believe them, if asked if I am cold or warm - I can't answer that either.

I can't feel the texture of cloth accurately, or the moment my skin is

burned by a hot pan (I too have scars), I react well after the fact. I

realize I jump and say Ouch, but in fact feel nothing, just a conditioned

response that no longer makes sense. How do you explain that to someon who

has never felt it (like your 30 year old doctor)? Passage of time is not

the same either, I have no actual 'sense' of how long it has been

since... I often spend prolonged time with a calendar just to give time

some perspective. I no longer have allergic reactions, nor tear with the

cutting of and onion, and I had fierce allergies to grasses and mint.

There are chest pains I cannot get explanation for ECG's are slightly

abnormal, but this is more like shooting pains like funny bone pain, either

side of my chest and nothing like my heart attack. That said how would I

know what the pain means? The pain in my knee which I had since an injury

at age 17 (and very well documented from surgery on) I no longer feel, but

the knee is still as bad as it once was. I have odd little bruises lower

legs arms hands and feet mostly some size of a pencil eraser to and some

seem to bleed from the middle over a couple of weeks spreading to about

6cm, they do not hurt and can start in front of my eyes while doing

nothing. Annie is this like your bleeding??

I have pains like bee stings all over randomly which produce no outward

sign. Lifestyle changes and rest don't change this for the better, but I

have noticed a general worsening of the lack of sensation. Stress does not

make this any worse, just harder to put up with it.

Lack of sensation makes me feel less connected to the world (like being

erased), and often makes me fearful (mostly when I am bored and isolated)

because if I had a heart attack now, would I know it? You woulnd't report

to a doctor that which you are incapable of feeling - is there even a name

for this lack of proper experiencing? What I have learned is not to react

but to stop and reason, pick up the slack for the autonomic functions as

best you can. Some days I cannot find the strength to lif a coffee mug it

feels so heavy - but, that is usually misinformation, we have been

conditioned to consider pain and heaviness as a clue not to do more than we

should, these clues may or may not be false, depends on the day. And my,

how clumsy this makes me, I feel like a three year old playing house just

trying to keep up a little with chores. If you know what I'm explaining

you probably have it too, mind-numbingly difficult to explain this to

doctors who were not trained to deal with MSA.

Dog was sick yesterday (ate too much of a good thing), so had to clean the

balcony. Did a little urban gardening ranoculus (ranuculi - 2 of them),

some ruby begonias and seeded the morning glories which grow (like the

weeds they are) accross a home made arbor made from last year's branch

harvest after a nasty storm. Still want a mini-lawn for the dog to lie on

and ornamental grasses tall enough to hide the view of the alley and a

small potted herb garden. Very life-affirming to grow things.

aletta mes

vancouver, bc Canada

web: http://aletta.0catch.com

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