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 > >
