Re: I'm still here!

SUSAN_RUEHLE(AT)HP-NewJersey-om2.om.hp.com
Tue, 29 Apr 1997 05:11:52 -0700

Item Subject: I'm still here!
Hi Everyone,

I'm Susie, I've been reading everyone's correspondence for
about a week now, but it was Julienne's message that really
made me want to write because I'm also very pig-headed and
aggressive,like the rest of my family.(You'll understand as
you read on.)
First of all it is my brother who suffers from TM;he is 37
years old. He was diagnosed about 5 years ago after numerous
tests. His symptoms were mainly just extreme numbness in his
legs and some in his arms with some lost of muscle control
of his limbs at times. But though it slowed him down it
never limited him completely in anyway. Tests showed he had
a lesion somewhere up high on his spine around his neck. The
lesion was "very large" according to the doctor and the
doctor was very surprised that it did not limit his motion
extremely. He is in great physical condition (works
construction) and the doctors said that's probably why it
didn't effect him more so. For about a year he went through
treatments,mainly vitamins and steroids, and tests,MRI's,
and everything seemed to be just great. The lesion had
basically gone away, the doctors said all that remained was
scar tissue. He came through the ordeal without any extreme
damage and was doing well. We were told that TM was not a
reoccurring disease and that this was the end of it.
Well 5 years later and it's back! It also seems to be much
more powerful this time. It is striking more often, more
intensely, more painfully and for longer periods of time. It
has actually temporally paralyzed him form the waist down
for several hours at a time. He also experiences those
"weird aliens" in his legs these days.
My problem and questions are...Can TM reoccur? Or is this
really something else? The other thing is, my brother is
being very stubborn about going to see a doctor. He feels
that if he starts taking all the vitamins again and doesn't
sit still, everything will be ok. How do I convince him
otherwise? Is time a critical factor here? Can they really
prevent anything that is about to occur or do they just try
to explain it the best they can? Last time all of the
doctors answers always seemed so vague, it became very
annoying to all of us, but especially to him. Why go to a
doctor when they don't have any real answers anyway!?
Also,the insurance company is giving him a great deal of
hassles about paying for treatment. Does anyone have any
insight to fighting the insurance company and winning? Does
anyone have any recommended reading on TM?
Sorry to ramble on so, it's just that you people are the
only ones who even have any insight on any of this. Besides
even if no one has any answers to all of my questions, I
feel better already. Thanks to all of you, I really needed
to get that out! May you all have a full and speedy
recovery!!!

Susie

______________________________ Reply Separator _________________________________
Subject: I'm still here!
Author: Non-HP-kentskov (kentskov(AT)msn.com) at HP-ColSprings,shargw2
Date: 4/25/97 6:10 PM

Hi, it's Julienne again.
Thanks for all the responses. I feel very cared about! The MRI showed
reduced swelling in the spinal cord, lesions about the same. This is as
compared to six weeks ago, which leads me to your question, Barbara. TM is so
subjective - everyone bases my healing upon how I'm feeling on any given day,
and we all know how that fluctuates! So I have requested (actually demanded,
I just didn't want y'all to think I am as pig-headed and agressive as I really
am!) frequent MRIs. So far the insurance co. hasn't complained, because my
Neuro likes the idea of seeing what is going on. I've had three MRIs in six
months. So, Barbara, go for it!

I really appreciated Lorraine's letter. Isn't it an odd feeling when yo
u
find a case a lot like your own? The side-effects of cytoxin scare me, so as
long as I'm making some progress on my own I've decided to opt for no
hospitalization at this time. The Lupus-TM connection is interesting. I've
been tested three times for Lupus (each Doc saying "Well, the other guy could
have loused up the test...") and all neg. So then they say "Could be
anti-serum lupus..." Great. Let's just call it "George" and be done with it.

So, everyone, how's your George? I'm waiting to ask my Neuro if he has
any
evidence that it is my immune system attacking my spinal cord, or if this is
just an over-educated guess. I can't see the wisdom of flooding my body with
an IV drug which will lower my white blood cell count and destroy my
platlettes just in case my immune system is hyperactive. It is a wacky world.

Quickly, to Bill, it must be very tough to get this "acute George" at th
at
young age. I'm 37 and it frustrates me to try to sit still long enough to
absorb all the lessons contained within this 'learning experience'. I've been
told recovery from everywhere between three months and three years - nobody
knows what your experience will be. For me it's been a tightrope walk (roll?)
between trying to kick the disease's butt and relaxing and feeling what is
appropriate behavior for each varying moment. The thing that helps me the most
is really appreciating what you have got and can do - and getting WAYYY
imaginative about how to do what you want to do.

I've blathered on enough. Thanks for all of you. Nurse Ratchett ain't
getting her claws on me quite yet! (With apologies to Karen for the
closed-minded occupational stereotypes I am perpetuating in cyber-space.)

Love,
Julienne