CFIDS & Fibro...PLEASE ALL update....

Discussion in 'Fibromyalgia Main Forum' started by MelG, Feb 11, 2003.

  1. MelG

    MelG New Member

    I had another MRI done a few weeks ago. While I was in the doctor's office, he put the radiologist on the phone. He was on speaker phone and I'm not sure if he knew it or not.

    He said he sees these lesions, that don't enhance, don't caveate (sp?), but these people are like really sick and he can't figure it out. He's been trying to do studies and that what will happen is some doctor will write something like migrane or vasculitis and other b.s. diagnosis, when they know it's b.s.

    I almost fell out of my chair.

    I have been on Copaxone now for almost a month. I am now, entire off all pain medications. I still walk into walls, have "fibro" fog, etc.

    I'm not saying everyone out there has M.S., but I do think it's a dymyenating illness when you are experiencing neurological symptoms.

    Bottom line ladies...don't let anyone make you think it's all in your head. Because it's not!!!! It's in your brain! It's real. They don't know what the hell it is but they don't want to tell you that because they think they will frighten you.

    The CDC, as we see, is not taking CFIDS or fibro serious enough. The names that are given to this disease are to...make it sound like the patient is, in some way, mentally deficient. This really makes me crazy.

    You know, if you are told long enough you are depressed, or you are stressed, or it's just your nerves, etc. etc.

    Btw, the radiologist said average age is 40 and mostly female.

    Just an update from your CFIDS-Fibro. friend, who never forgets about you.

    Cyber hugs & prayers to all,
  2. MelG

    MelG New Member

  3. MelG

    MelG New Member

    They don't know what the hell it is.

    Currently, RRMS (Probable), Lesions which do not enhance, mean, according to the National M.S. Society, mean they are not currently active, which is a GREAT! thing. But that is not to say, you won't get sicker. You might even get better! The disease is not predicable.

    + Suspected CDS Encephalopathy (Cat Scratch Fever)


    How do we get it called a better name ladies??? Ideas? I mean serious. The signing of petetions on some website is not going to cut it. :) lol

  4. Mikie

    Mikie Moderator

    Thanks for sharing this info with us. I really think a lot of docs are completely in the dark when it comes to a whole lot of illnesses like these. They either B.S. you so they don't have to admit they don't know; try to make you think you're stressed, depressed and/or just tired out; or, the honest ones tell you they don't know.

    Take care of yourself.

    Love, Mikie
  5. mersey_ferryman51

    mersey_ferryman51 New Member

    Thanks for sharing that with us.

    It's an eye-opener!

  6. Lendi

    Lendi New Member

    But since I just had my physician of 18 years tell me it's all depression and a sleep disorder, I really needed to hear something to tell me it isn't. Thanks, I'll try re-reading it during a lesser brain fog moment. Lendi
  7. MelG

    MelG New Member

  8. blondieangel

    blondieangel New Member

    What EXACTLY does this MEAN?

    There is a weird medical history on both side of my Mother, who was hardly ever sick, but also had a 'dismissive' type personality, starting losing her keys, bumping curbs about age 50 - 52. From there she slowly declined and died at age 60 with an undiagnosed brain disease which had resulted in SEVERE aproxia and aphasia. At first they thought she had Alzheimers, encephalitis, mad cow disease and on and on...we'll NEVER KNOW what happened to her brain or what th CDC is hiding from us! There was supposed to be an autopsy of her brain after her death. 3 days later her body was still sitting at the morgue. THE CDC WOULD NOT OPEN HER UP DUE TO A RECENT FINDING BY AN ENGLISH DOCTOR!!! Had she been cut open, they would have had to store away EVERYTHING THAT HAD TOUCHED HER in some sort of vault...not wanting this 'thing' they suspected to spread! It was a case on the x-files! All this talk of microplasmas is so confusing to me...and really makes me wonder...