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In a message dated 3/30/00 6:30:53 AM Central Standard Time,
klement@... writes:

<< I've heard
accounts of the same balderdash being spewed from neurologists to their
patients, from many many MS sufferers on the support newsgroups >>
Buzz,
I have to add my 2 cents worth here. I back up every word you've said about
this. It is exactly the same for lupus. It's known as the great imitator
because it can look like so many other things. From the time symptoms appear
until lupus is diagnosed is an average of 7 years. Patients are often made
to feel that it's all in their heads. My lupus involves my central nervous
system and so it almost perfectly mimics MS. I went through the wringer with
doctors looking my MRIs over and telling me that there was nothing wrong with
me. They said that my loss of vision (actually optic neuritis, of course)
and my numbness and weakness were just manifestations of hysteria. I began
to feel terrible about myself and to question my own sanity. Turns out I was
right and they were wrong. (blowing big raspberries here...)

Anyone who is searching for a diagnosis needs to know that they should RUN,
not walk from these patronizing, consdescending creeps.



*** KiM ***
runs with scissors

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Buzz,
No you didn't offend me. I was just saying where the info that I gave came
from. : ) Should have put that smiley face there before so you would know I
was replying in a : ( face! LOL.
Thanks for the info. My sister has Chronic Fatigue with Fibromyalgia. This
neuro guy was trying to convince her she had MS, not CF. Maybe he likes those
letters better! Anyway, she has let him slide. He put her thru all kinds of
tests which she has already had, then told her there was no reason one of his
patients couldn't live alone, and put her in physical therapy and rehab.
Now, with the problems she has, she does good to be able to have two good
days a week to do anything, the rest of the time she can't walk, or she can't
use her hands, or she is ill and can't get out of bed. So, of course, she
got kicked out of therapy cause she had to cancel appointments. This was no
big deal, as they were forcing her to do things she just couldn't do without
a great deal of pain, or just not at all. When she started telling me this,
we live in different parts of the state, or I would have put an immediate
halt to all this rubbish, I told her to dump this guy stat. He obviously
doesn't believe that CF exists, or he wouldn't be doing this. So thats part
of sad tale. She is in a great support group on the web, in fact, I think
she does an information news letter for her group. This is the really only
type of group she can be in, as it dosen't matter if she misses a meeting
cause she can't get a ride there or can't walk that night, or whatever, she
can just go answer her email!
Thanks for your time, and I wish you good luck.
Teresa

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In a message dated 3/30/00 6:30:53 AM Central Standard Time,
klement@... writes:

<<
The problem with most neurologists is that MS is not their
specialty.Very few Neuros are up to date on MS.....there is no money to
be made treating an MS patient.Drug companies put little effort into
cure research because there is toooo much money to be made on treatment
drugs.

It's pretty much a health *maintenance* diseases like CFS or Arthritis.

>>


I found this to be very curious. When I first became ill in 1993, I was very
weak and had trouble even washing off the kitchen table. After weeks of
feeling this ill, I went to see my family doctor. He thought that I had a
bone spur in my shoulder so he sent me to a neurosurgeon. The neurosurgeon
did and MRI and then told me that I had MS. He pointed out "plaques" on the
MRI and said that I would have to go see a neurologist, since his specialty
was surgery. Well, it took weeks to get my appointment, and by the time I
did, I was feeling almost back to normal (except for the numbness and
tingling in my arms). The neurologist refused to take the neurosurgeons word
for it and said that I had diagnosed myself! He said that he could see
nothing wrong with me and that I was healthy as a horse. He did say that my
blood pressure was extremely, extremely low (which probably, according to
him, cause the dizziness, weakness and other symptoms) so he said I should go
home and start eating alot of salt! Well, I have tried (since new symptoms
have come and gone in the last few years---vision, problems with my legs,
pain and many others that I would really rather not go into) to see other
neurologists. They always refuse to do any more MRIs or any other tests, and
instead hinted that all of this is in my head. However, with all the pain I
had (and some other symptoms that cannot be faked), I knew this wasn't so.
Finally a reumatologist said that since my killer T-cells were extremely low
and I had all the "pain points" that he thought I had CFIDS and Fibromyalgia.
That has become my "official" diagnosis, even though a couple of my symptoms
don't match the criteria---and basically has my doctor very concerned.
Anyway, I have tried everything on my own, change in diet, natural medicine
and herbs, but nothing has helped. Your info on the MRIs has been the first
I heard. I have been told that my first MRI was "nonconclusive" (they said
that they could see "something" but weren't convinced that is was plaques
like the neurosurgeon said) and that they could see no reason for another
MRI, even though it has been a few years. They also said that since I didn't
have a conslusive MRI that I didn't have MS and there was no need to be
retested. Therefore, I grasped at the diagnosis of CFIDS and
fibromyalgia----at least then I have a diagnosis!!-----and I have quit going
to doctors for a diagnosis. Now the only doctor that I see is my family
doctor---who I like very much-----and he treats me for the pain and other
symtoms. I figure that if it is something like MS, I will have to wait until
it is so obvious that it hits them over the head! In the meantime, I will
just try to help myself as much as possible!
Tammy

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In a message dated 3/31/00 9:36:46 AM Central Standard Time,
klement@... writes:

<< will tell you this though ... the majority of auto immune disorder
patients I've had personal contact with have had to fight like hell to
be treated decently and honestly.
An informed patient has to tread carefully so as not to bruise doctors'
egos and get the treatment they deserve!!!!!! >>

Buzz,
I agree, that is why I have given up for the time being! The last time I
went to see a "specialist" that my family doctor referred me to, he gave me
all of 10 minutes of his time. He said to me"Well, if I just looked at your
history, I would say it was MS.
However, the neurologist (the one that was a jerk!) said that you don't.
Therefore, I don't see any reason to have an MRI, because you don't have MS.
It worries me that you have _______ with this, as this is usually indicative
of MS. But once again, I just don't think it is because the neurologist said
that you don't have it. I think you should start looking in another
direction. I can't help you." That was the last straw for me. Basically,
he took one persons word (who believe me was such a jerk, that I would never
want to mess with her again) and refused to even examine me. It didn't
matter that family went with me and tried to tell him how I am really sick,
he just didn't want to take the time. If only I could see someone without
taking the records from that one doctor, however, they won't ever see me
unless I forward everything! That one doctor is really hurting my case. I
need to start off fresh, but it just won't happen. I am so tired of beating
my head against a brick wall! Well, sorry to go off like that, but this
subject is very touching to me. Right now I am furious at doctors!
Tammy