bain

Hi, I was just diagnosed in the fall when
I lost part of my vision. Even though I'd
been tested for 8 years because of tingling,
twitches, constant balance problems, trigeminal neuralgia. Finally a spinal tap
showed what 3 MRIs in 8 years did not. My
vision has been "out" for 9 months now,
is better, but hardly 100%.

I never am without balance problems, fuzzy
thinking, and "buzzing" in my head/body for
any length of time, so I don't understand
"flares" and "exacerbations". I don't ever have,and haven't had, for years, any
long period of several weeks or anything without those problems. The doctor says
the damage has been done and I probably
wont be without these problems. Only occasionally is it so bad that I can't
walk. I know what to do to avoid that.
I was an athlete, with a daily running
or other workout, and I cannot, at ALL,
do that, anymore. Can only ever take very
short walks when it's nice and overcast
and cool (even then, I don't feel so great
after)

If I get too hot (I'm in texas where it's, like, 1000 degrees some days) and I get out in it to run errands, I will not be able to think or do anything but lie down, and my eye goes almost completely dark.

I have to take care not to get too rushed, too stressed, too tired, too upset, too HOT,
etc. I don't take showers anymore because
i fall all the time.

I've been coping on my own for so long,
using Valium to stop the worst balance/thinking problems, and just
hiding away from any kind of stress or
pressure, thinking I was losing my mind.
(I had a drug-addicted neurologist in the
beginning, who dismissed me as a wacko,
so I was afraid to pursue this until my
eye went blind)

ANYway, long story short: I seem to
be getting worse in that heat is bothering
me more, and I have more falling/dropping
incidents, and more tingling and tightness
in my back and legs. (I also have Fibromyalgia)

The doctor really really is leaning on me
to start Copaxone. I really fear side effects
that will only add to my current problems.

Will Copaxone help immediately with heat
tolerance and balance problems?

I have
no problem with injections, because I give
myself allergy shots. But I really am
bugged by this "stuff" that Copaxone is
made of, and will it show results right
away? I'll have to pay $35.00 insurance
co-pay (which I can barely afford, since
I almost have to take monthly unpaid leave, when I'm not doing well)

I'm really angry that I'm not able to
be the runner and fit person I used to
be, and I'm wondering if this is forever,
or if this is a LOOOONNNNNG exacerbation!

Do you all have problems that never really
go away? Or that can occur daily, if
you're not careful? I don't see that
I ever have any kind of remission.

The doctor says it's R-RMS, but...it just
never remits.

I'm rambling, but I need to think out
loud and get feedback on Copaxone. I definitely know I will NOT take chemo or
steroid therapy, but the doctor says he
really feels the Copaxone will be just the
thing.

Big decisions, here. I am single and
my only support in a job with good benefits
but yucky pay -- I basically live month to
month. (thank god my apartments pays my
elec bill, I keep it 65 at home, the only
time I feel "okay")

any help is welcome, my address off-board
is enjay54@yahoo.com

cheers --
bain