I took several pages about TM with me to my PCP and asked him if he would like
to have it in my file. He thanked me for them and said he would be glad to
read anything I brought him. I was dx by a neurologist and treated at a
hospital 40 miles from my PCP so it didn't surprise me that he wasn't familiar
with TM. I think it is a good idea to take literature to your PCP.
Patti - Michigan
---- natalie mizenko <[EMAIL PROTECTED]> wrote:
=============
Regina,
You have every right to vent. We all have to vent every now and then. I
went to my back surgeon who had done 3 surgeries on L5-Sl the last 2 years,
finally the last surgery he fused it. I had Cauda Equina Syndrome. I had
heard that it could paralyze you, very rare tho. Well, he said it was not
related to Cauda Equina & was not anything from L5-Sl. He didn't know for sure
cuz I couldn't have an MRI. I had a dorsal column stimulator in for pain (14
years it was still in & didn't work) but I cud not have MRI's due to the
magnetic leads attached. So he left went on vacation for 2 wks. & he sent me
to a Rehab. I think he should have sent me to one of his co-doctors, but he
did not. By the time he was back both legs were paralyzed and it was too late
for any treatment to work. And my internist to this date says "I don't know
hardly anything about TM". Why doesn't he eduate himself on it? P.O.'s me, ya
know? An a internist of all things. It was very ironic, but
another person in my internist's office got TM within a couple mths. of me
getting it. I went in for pain control (hospital). Another dr. was on call &
he said it is ironic as rare as TM is; I have a patient upstairs I'm doing
steriod treatment on to try and reverse it. He said "I didn't know anything
about it, til I looked up the symptons on the internet". I felt like saying
"will you eduate you partner on it, my dr.? But, I did not. I think one day
I'll print out literature and give it to him the next visit. Geez, I ended up
venting. I guess it's the day. Natalie M.
Regina Rummel <[EMAIL PROTECTED]> wrote: I was diagnosed with Sjogrens in
the mid-80s and that's when I started seeing a rheumatologist regularly. After
that, I understood why I had dry eyes and have been using eye drops ever since.
I subsribed to the Sjogren's newsletter and joined a group. Many in the group
were in bad shape, complications like Lupus, etc. I had no problem beside the
dry eye and some fatigue. I learned about autoimmune diseases, possible
complications, central nervous system attacks unlikely (so they said at the
time), and I profusely thanked my lucky star that all I had to complain about
was dry eyes.
Then, sometimes in 2004, I woke up with strange sensations in my left leg and
sensed my balance a bit off. Checked on line, and found something that
described what I felt (peripheral neuropathy), made an appointment with a
neurologist that I also began seeing regularly.
I didn't see the need to see a GP. Rheum. and Neuro. were taking care of me
consulting with one another. That was maybe a mistake, but why also see a
third doctor, I thought.
Shortly after, when I told the rheumatologist that I didn't feel my bowel
movements, she immediately sent me for Cytoxin treatments, an MRI, and put me
on high doses of prednisone. I looked at the prescription and read "Transverse
Myelitis". I had no idea what she was talking about. And of course, I saw the
neuro regularly.
I progressively got worse in spite of the above treatments, plus IVIG
treatment. Nothing helped.
The last time I saw my rheumatologist was in February of this year. (I'll be
venting now.) I had been seeing this woman for 10 years, ever since I moved
from L.A. I walked in for the first time with a walker. I was so weak and
tired, I could hardly walk. Even though she knows me well, she never asked
"what's with the walker, what's going on?". Oblivious, she checked me out,
filled out all the paperwork, and sent me on my way with a cheerful "You're
doing great!". I can't even begin to tell you how angry I was. How can a
doctor who knows you so well be completely oblivious when she/he sees you walk
in with a walker for the first time in 10 years?
I called her back the next day and insisted that I get an MRI because I was
on the verge of getting a wheelchair and I knew something was very wrong. I
got it, and promptly got a call from her telling me that my "cord is at risk,
make an appointment immediately with the radiologist, he'll take care of it".
Again, I didn't understand what an AVM was. The radiologist sent me to a
neurosurgeon in San Francisco who apparently was familiar with this AVM thing.
I was soooooooooooo happy!
I thought he was going to take care of that pesky problem in my spinal cord
that had been fermenting for as long as possibly six years he said. My Gosh! I
thought, if I had caught it six years ago, maybe I wouldn't have TM now. But
who knew?
Well, I had the surgery, I went through acute rehab, blah, blah, blah.....
And I'm back to where I was. No difference.
Same struggle, blah, blah, blah....
Now, I know you're wondering why I'm telling you all this. You've probably
heard it from me before. Well, I'll tell you. It's that piece I read last
night in the new TMA newsletter on page 20 and I quote Julius Birnbaum, MD:
"In my experience, patients with neurological rheumatic disease are fatigued
by the process of being separately evaluated by individual Neurologists and
Rheumatologists, etc."
In my case, "fatigued" is an understatement. If you've read that piece, I
would really like to hear your comments. Are these doctors really helping us?
If there is no cure, outside of needing meds, what's the use? "Que sera, sera"
is on my mind.
Incidentally, I hope you're not "fatigued" yourselves after reading this
blah, blah, blah... message. Please forgive me if you are. You've been so
kind in the past in allowing me to vent freely.
R
---------------------------------
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