MS
Wheel Chair
Finding
a Doctor to Treat Your MS
Hi: I know this page is supposed to be about MS
wheel chair (s), but I saw this article in a forum
and thought it might be a whole lot more valuable
to you than me talking about what type of MS wheel
chair to purchase.
I
hope it's ok with the author...Carolyn who wrote
it. Somehow...I think it's OK.
Thanks. Here's the article from Carolyn:
"I
suppose it's a given - a diagnosis of MS means
the patient must be under the care of a neurologist.
I was unfortunate in my choice to stay with the
doctor who diagnosed me, even though I had not
been happy with him during the process. Ah well,
live and learn.
Out
of some sense of who knows what, I stayed with
this guy even though I didn't like his manner.
On the day he finally chose to tell me the conclusion
he had reached after months of testing, he stepped
out of the room for a minute, I guess because
he thought I might cry, then came back with a
word of advice. Or several, it seems.
"Don't
think you can fight this thing," he said.
"There is no way you can." Then he asked
me how I dealt with stress in my life. "I
work through it, I work hard at it till it is
gone," was my response. "Not any more
you don't," he answered.
And
like the good patient that he wanted me to be,
I took the man at his word. Even though every
fiber of my being kept telling me not to, I just
let the bad roll right over me. I gave in, gave
up, just let the MonSter do what he wanted in
my life without fighting.
After
that, I started finding so many contradictions
in my treatment. What was supposed to be good
for me one visit was frowned upon on the next.
I stayed in such a state of confusion, and none
of the questions I asked ever received a decent
answer. I should have left him, and didn't.
In
fact, I followed his method of treatment, the
do-nothing method, until I went completely numb
from the waist down and had to be hospitalized.
But I couldn't reach him when I needed to, and
came in under the care of the neuro who happened
to be on call.
And
she proceeded to retest me, decided I did not
have MS but something that needed to be surgically
treated, called in a neurosurgeon who ordered
even more tests. And the results?? Sorry, you
really do have MS.
When
he finally did show up on my case, his treatment
of me was shameful. Without even seeing me, he
wrote orders to send me to a rehabilitation hospital
to learn how to use a wheel chair and to avoid
"hurting" myself.
When
my insurance refused, he became angry with me,
and coming in very early one morning, he told
me if I wasn't willing to follow his plan of treatment,
I shouldn't have come to the hospital at all.
When I answered that I couldn't move, he responded,
"You wouldn't have died." I should have
left him, and didn't.
Needless
to say, I wasn't in the best of hands for my care
and treatment. But I stayed around until he cut
me loose in a registered letter saying he no longer
felt he could care for me because I didn't follow
his orders. He left me on the verge of another
major flare, and he knew it.
When
I did go down again, much the same as the other
time, I ended up in the care of a different neurologist,
one I liked and who seemed to like me.
I
continued along with number two, and between him
and the specialist I was sent to, they managed
to keep me without a major flare for close to
two years. Then, unexpectedly, neuro #2 decided
to move his practice across the country. Geez.
. . .back on the hunt again.
This
time I relied on a friend of mine, a nurse who
knew a network of nurses, and asked her to find
me somebody good with MS. She and her buddies
came through, and I am now with neuro #3, and
do hope to stay here.
This
young doctor seems to be well suited to me, and
is compassionate and on top of what is happening
with MS. Let's just hope that this relationship
lasts and I do not find myself back to fishing
the seas again any time soon!
I
do really believe that the relationship between
an MS patient and her neurologist has to be one
of trust on both sides. You have to feel comfortable
with the treatment you are receiving, or at least
comfortable enough to let him know that you don't
want to follow his present plan.
That
can be difficult, but it is so very vital. Knowing
where you want to be, and having someone to guide
you there can make your life so much easier. And
believe me, we need all the help we can get."
