Hi again Regina,
Well not exactly. I have two very long lesions, each one covering three
segments of cord or more. I believe that my total damage is from roughly T2
though T10. You're right, all three diseases are similar in the type of
symptoms, yet lesion make up and pathology/mechanism of disease, are very
different. TM is most often a one hit experience, with no further attacks,
although there is recurrent TM and also cases of LETM without having
Devic's. We do know for sure, that our disease is an autoimmune
process, because a specific antibody has been identified. Unfortunately,
our attacks are usually fairly severe, and yes, numbers estimate that
roughly up to 1/3 of relapsing patients will die during an attack, either
from direct brainstem involvement and respiratory failure, or a super
infection caused by the heavy doses of immunosuppressants that we must
take. I was at the neuros the other day, and he had a young medical student
there. He was explaining to her how often this disease is misdiagnosed, and
how it is a totally different disease process from MS. She had never even
heard of it.
No, I don't work, nor have I ever worked, in the medical field. It's just
that whenever I found myself flat on my back knowing that I was facing more
similar attacks, and with very little hope, that I decided that I'd better
educate myself re: Devic's fairly quickly. Last summer for example, I was
rushed to a prominent and very large hospital in Chicago. I was presenting
with blindness. We had spoken to a very reputable and competent neuro and
researcher just very shortly before going to the hospital, however, whenever
I arrived, the nurse decided to send me through triage anyways, and just
referred to it as code Red-eye. A neuro opth came in to examine me, and
asked me: *Why are you taking such large doses of immunosuppressants? Did
you recently have a transplant?* I said, *No, we are trying to prevent
attacks of paralysis.* He said, and this is the absolute truth, *Why would
you be worried about paralysis? This is a disease of the eye.*
WHATT By then, I was at the stage of going berserk, and informed him
very curtly, that no, it wasn't, that it was a paralyzing and blinding
disease. He said to me, *Oh? It is?* , and very discreetly excused
himself, with a *Be right back.* Finally, the neuro that we had originally
spoken to was contacted, and my Solumedrol was ordered immediately. Now, I
carry all of my info in my purse. The local ambulance service also knows to
ship me straight to Pittsburgh. A dear friend installed life Alert here at
my apartment, and I have neighbors and friends who are very aware of my
disease and know just what to do in the event of an emergency.
How does one know that they are going to have an attack? Regina, with both
of my paralytic episodes, I simply went to bed normal and then woke up that
way. It moved that quickly. I did have one minor symptom though and that
was allodynia. (Strange skin sensations. A hurting of the skin.
Sometimes, tingling and burning. Bizarre little effects. ) but I attributed
it to the usual aches and pains from the pneumonia that I was being treated
for. Yes, this monster is sure a bummer.
Anyways, thank you so much for your interest and well wishes. It's so
appreciated.
Your friend,
Grace
