> >TOTALLY ludicrous -- loss of sensation with muscle control maintianed is
the
> >exact opposite of GB --wish some of those doctors would be not so damn
> >snooty and open their copies of "Current Dignosis and Treatment" --even
in
> >front of the patient --nobdoy knows everything although some physicians
seem
> >very unable to give up on that myth ;-( (it gives us all a bad image
and
> >"I" do not like it!!!)
> >
> >
> >
> >bryan
> >
> >Bryan,
When I had my mishap at the Minneapolis Airport, I lost total use of my
legs. I never lost feeling in my legs, which IS totally in line with
Guillian Barre. The reason the doctors ruled out GB is because it is an
ascending disease, making its way up to the respiratory system, and mine
seemed to be locating itself in my legs, and not moving anywhere else. All
the poking and wiggling of my toes, I felt the touching all the time, I
just could not do any of the moving myself. Even to this day, I have
"hypersensitivity" in my leg, and still cannot hold my toes up.
Thank you for reading my response.
Debbie
Amy Thropp wrote:
> One of the real issues seems to be having access to Doctors who keep up
with
> what's new. Our real frustrations are related to getting doctor access
and
> attention. Steve's (my husband who has TM) experience was really
negative.
> When he first started having symptoms, he saw our GP who prescribed some
> medication that didn't have any effect at all. It took a week to get an
> appointment with her (and she is just the PA, not the MD) and all she did
> was order up some tests (mri's). It took another week to schedule that,
> three more days to read the darn things and then two more days to call
him
> back to take more pictures. Then, they recommended a neuro-surgean. It
> took a week to get to see him, only to have him refer the case to a
> neurologist. All this time, no useful treatment or even relief
medication
> was provided.
>
> It was a full three weeks before Steve got on the steroids that actually
> slowed down the process of the disease and another month before he was
> diagnosed with TM and prescribed Neurontin which actually was the only
> medication that seems to help him. This has been extremely frustrating.
>
> This doesn't seem to be the way to run things. Anyone got any comments?
>
> Amy Thropp
Amy,
I totally know how you feel, although I had immediate care and diagnosis
while in the Neuro Trauma Center in Minneapolis ( I had no choice-I was
going nowhere until I could walk again), when I got home, it was three
weeks before I could be seen by anybody, since I do not have any doctor. I
have always been healthy up until this time, had no need for doctors. The
only doctor I could get in with was a Neurosurgeon,(I needed a referral
while I was still in Minneapolis, and it was the only name I could pop up
with from a friend back home in California) who knew when he was taking me,
that he was immediately to find me a Neurologist, but he wanted to get his
$200.00 worth in, before turning me over.
I have read somewhere, that the quicker the diagnosis and treatment, the
better. So I can understand your frustration. I have never heard of this
Neurontin, which has been popping up frequently in these e-mails. I have
to ask my Neuro today when I see him. All that was given me was Baclofen,
for the Spasms that started when they started me on Physical therapy. and
Tylenol codeine for the pain, and Valium for sleeping. My new neuro would
not refer me to PT, said I could do it on my own, so the spasms have
stopped, and I am no longer taking Baclofen. Only a Valium at night to
loosen up the tight muscles, and codeine for the pain.
Anyway, I am rambling off the subject again. When the Neurosurgeon got his
hands on me he ordered a CT Scan and another Lumbar puncture. He didn't
feel like reading all the test results I had brought back with me from
Minnesota. It took him a full week to look at the tests, before he even
called the Neurologist who eventually was going to take my case. Then
another week for an appointment.
Life in the big city. I am thinking of another career in the medical
field. Just don't know where to start.
Debbie