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
