Re: Just what we need - Truckdrivers with multiple sclerosis


"Gringo" <anonymous@xxxxxxxxxx> wrote in message
news:dgxDf.10832$eY5.3484@xxxxxxxxxxxxxxxxxxxxxxxxx
> ken wrote:
>
This is one of those hard to answer questions, because its different
for every person.
My enemy is heat. When I get over heated my symptoms get worse.
I have a hard time walking, because it feels like my right foot has a
sixty pound weight
on it. Its weird in a way because I can push like no tomorrow with it,
can leg press over 300 pounds on a machine, but lifting the leg is a
real chore. Sit down for 10 minutes and cool off, and I'm like
nothing happened.
I cant do a lot of things I used to be able to do. I am not going to
unload 43,000 pounds of floor loaded beef anymore. I cant heft a
short block 327 on my shoulder and walk with it, I am not going to
pick up a 20 gallon drum of Kendal bearing grease off a truck and set
it on the floor on the other side of the shop any more. But I aint
dead yet ether.
Over the last 6 years since diagnosed, I have had 3 exacerbations
(this is what an attack
is called) I know when they are coming on, a loss of some tactile
sensation, and numbness
on the side of may face, almost like novacane is how it starts for
me.
I know at that time I have about 10 days before its going to knock me
down. Treatment
is a five day spread of steroids intravenous. The exacerbation is
caused by inflammation of the central nervous system, the steroids
knock the inflammation down. Knocked down for me is great difficulty
walking, weakness on the left side upper body, and some slurred speech
The main "treatment" are the ABC drugs, Avonex, Betaserone, and
copaxone. Add to that a new one called Rebif. Avonex is taken once a
week, nice 2.5 inch needle, inject into muscle. Rebif is the same
basic drug, but its three times a week, a 1/2 needle subcutaneous
between the skin and muscle. Betaserone is another version of the
first two also given subcutaneous , which are interferon's, ether 1-a
or 1-B. Copaxone is Glatiramer acetate. They work different, the
first three are immune system drugs they work by trying to suppress
the cells that are attacking the myelin, that's the covering over the
nerves, sorta like isolation on wire. Copaxone is every day
subcutaneous injection. It try's to modify the bad T-cells by
flooding the body with a substance that is similar to myelin. the
weird part 2, the signals along the nervous system don't travel down
the inside of the wire, but over the outside. Sclerosis is a fancy
word for scarring, and off course multiple means many. The minute
electrical signals that make up the 'signals' in the nervous system
cant "jump" across the scarring.
Side effects for all are basally flu like symptoms, that tend to go
away over time.
The secret to long time holding it in check is not to stop taking the
drugs, and the minute you start
feeling like an exacerbation is coming on seek medical attention.
With each attack mobility is lost, in the beginning recovery is almost
complete, one because damage isn't severe yet, and two because the
nervous system can "re-route" around damage, but there is a limit to
the re-routing.
Long term, my vision has decreased and will worsen, I have my eyes
checked twice a year.
On really long hikes I get a little drop foot when walking.
Eventually I will end up in a wheel chair, but not today, and not with
out a battle.
Montel Williams has MS, was born in '56, age 50 you wouldn't know it
to look at him, and it appears given the heat of stage lights, heat
isn't his enemy, yet. Richard Pryor was 65 when he died this year,
was diagnosed with MS in 86. was pretty much confined to a wheel
chair since 98. But he lived a hard life, the drugs, the fire, and a
bad heart, triple bypass in '89. How much that contributed, no one
can say.
Clay Walker has it., hes 37, was struck at 26, puts on a hell of a
show on stage..
Nobody dies from MS directly. You die from complications, maybe you
brain cant tell your heart to beat anymore, or your lungs to breath.
It can and does affect every thing in your body the nervous system
controls. Oh and to clear up a major misconception, MS is not a
neurological disease, it is an autoimmune system disease. And its not
contagious. Although they are as clueless today about what causes it
as they were 50 years ago. Its primarily diagnosed with MRI and Cat
scans, and verified with a spinal tap, now there is some pain for you.
Its more often found in women then men. It has been primarily a
disease that strikes people who spent their adolescent years north of
the mason dixon, but in recent years it seems to have jumped that. It
usually strikes around age 40, but has been diagnosed as young as 14.
It is usually a very slow progressing disease, but it changes.
The three types are benign, has an attack, might not have one again,
or maybe 20 years later. Looking back that's me, starting around age
19 while in the service.
then we get Remitting/Relapsing, that's me now, and Montel, and Clay
Walker. We have attacks, aka relapses, and then it clears up,
remitting. Its the most common form of the disease.
And finally there is Progressive, that was Richard Pryor. The attacks
just keep coming, with little improvement between them, and loss of
mobility. Radiation and chemotherapy are beign tested for this, the
idea is to totally wipe out the immune system, and then a bone marrow
transplant. Its experimental, and the risk of any infection is great,
and when your immune system is wiped out, any infection is deadly.
In just about all cases those with MS move from one type to the next.
The unknown is how fast it progresses, which is different with
everyone, Don't I have a lot to look forward to.

Asians don't seem to be stricken with it.
http://www.nationalmssociety.org/
Oh and one of my favorite actors, and someone who inspired me to stop
feeling sorry for my self and get off my ass when I was diagnosed,
David L Lander, aka Squuiggy. I strongly recommend get a hold of his
CD audio book "Fall Down Laughing., How Squiggy caught multiple
sclerosis and didn't tell nobody". because if you tell, you run into
ass holes like the one that started this thread and think MS means
cripple and you cant work, at least that's what they think.

Whitelightning


.

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