[TMIC] Fatigue/Devic's vent/Frank
Exactly Frank---demyelinization (sp?) is demyelinization. Overactive immune sytem---not immunodeficiency. You know it amazes me whenever I go to some of the Devic's sites---relapsing Devic's having such a poor prognosis---that people truly have no idea of the nature of their disease. There's always all of this talk about immunomodulatory drugs---such as used in straight up MS---that don't work for people like us. Our immune systems are in overdrive, so an attempt at suppression is the route that most neuros take. I will read a post from someone who has just finished their umpteenth course of Solumedrol, with a dash of plasmapharesis thrown in just for good measure, who actually thinks that they've been *cured*. (Wrong, once you've got the NMO autoimmune antibody, it's there to stay, no matter that it may or may not be detectable in the serum test. Also, you can have an extremely low titre and suffer horrific problems, or have qn extremely high titre with no symptoms.) Meanwhile, they're recommending eliminating necessary *toxic* medications, downing a handful of herbs, doing such and such an exercise (Might that be standing on one's head in a corner whilst juggling bottles of echinacea and munching on root of dandelion?) owning one's feelings, and handing the whole sorry mess over to the the Higher Power. And oh, the poor women who are actually consiering additional pregnanciesnever mind that 2/3's of us die. IT both saddens, and infuriates me. Meanwhile, here I am, strugglilng to keep myself alive, doing everything that is recommended by the neuro team, and making it on a wing an prayer. Grace---who is feeling extremely digruntled todaymust be the humidity.
Re: [TMIC] Fatigue
Hello Judy, You have voiced exactly what my own neuros have told me over this last year. Recently at one of the Devic's sites, someone mentioned Provigil as a possible drug for fighting fatigue. The thing is, with every drug there are side effects. and unless you are willing to bear down and grit your teeth and cope with them, taking the drug is pointless. I personally hate all of the drugs that are necessary for my survival, but would much rather live with the side effects than the alternative. If my hands tingle---so what, at least I'm still alive. If my hair falls out from the chemo---I'll wear a doo-rag. It's a trade off that one has to be willing to accept. Like you, my fatigue is overwhelming---but thus far I haven't found a solution. Maybe someday. Grace On 5/30/06, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: Having had fibromyalgia and CFIDS for so many years before TM, I am used to the overwhelming fatigue. For me, it is nothing new that came with the disease. Over the years, more than one doctor has told me that the fatigue is brought on by the immune deficiency part of the diseases. The immune system turns on when we are first violated by disease, but in our case, does not turn off the way it normally would when one recovers from being ill. The amount of work involved in fighting disease takes up enormous amounts of energy, and some of our systems are overworked, sometimes to the point of giving in and that's when other viruses, etc take over, taxing our bodies even more to the limit. Does this premise sound like any other that has been voiced over the years on this TM site? Is it medically incorrect? I have always wondered. Any other viewpoints? Peace to you all, Jude
[TMIC] Non specific white matter lesions.
The University of Pittsburgh and also Northwestern here in Chicago, have both told me that non specific white matter lesions in TM or Devic's are more common than previously thought. These lesions do not follow the typical pattern of MS, however. I currently have four of them in my brain, BUT, I do not have MS. Grace
