I have been reading this group for a couple weeks, but my email to the
group always bounced. I was so glad to find Jim's web page and realize
that there are lots of myelitis folks out there.
I don't have transverse myelitis, but i do have some form of myelitis.
A bit of background....In the fall of 1994 I was hospitalized because I
lost the control of my right hand, and was very unsteady on my feet.
They discovered a plaque on my spinal cord between c1 and c2. Because I
was treated for breast cancer two years earlier, the first assumption
was that the cancer had metastized to the spinal cord. That was their
first guess. The other posibility they told me was that I might have
MS. Because they weren't sure what was going on, I had a spinal tap to
look for MS, and a whole battery of tests to see if there was cancer in
any other parts of my body. They came up negative on MS, and could not
find any other cancer, which was fairly inconclusive. If the plaque was
cancer, they were going to have to start radiation immediately. They
finally realized that the only way they would know what was going on was
to biopsy part of the plaque. The good news is that there was no
cancer. The bad news is that you can not really biopsy on the spinal
column without doing some damage.
For a while after the surgery, I had tingling everywhere except for my
head and my left arm and hand. I also had lost proprioception in my
right hand and both feet. (Proprioception is the feed back to the brain
about where your body parts are. For instance, I could send the command
to my hand to pick up a plate, but unless iconcentrated on holding the
plate, I wouild drop it right away, and my hand would do its own thing.)
Gradually, after several months the proprioception came back, and the
only tingling and numbness was in both feet and my right hand. The
doctors doubt that there will be anymore major recovery.
Anyway - from reading the emails, it looks like I have alot of the same
concerns as the rest of the group. I know in the past few weeks that
there has been mention of the relationship between chemtherapy and
myelitis. The nuerologists thought that the fact that I had had
chemotherapy and radiation 2 years before was interesting. I also had
encephalitis (inflamation in the brain) almost 20 years before the
myelitis. His comment was that I might be one of those people whose
bodies periodically attack themselves - cheery thought that.
In the lst couple of weeks I've had numbness on the left side of my
face, so I will be having another MRI. Part of what drives me nuts is
waiting for the other shoe to drop. Cancer was a walk in the park
compared to this stuff.
Sorry this got so long. Its great to be able to be in touch with people
who might have a clue what I'm talking about.......