Brain MRI - important information

Discussion in 'Fibromyalgia Main Forum' started by maps1, Sep 4, 2009.

  1. maps1

    maps1 Member

    Firstly I was a poster here for many years until April when i was diagnosed with Lyme (if I dare say that word).

    I have not been visiting this board but have just read the post from the moderator and it makes me really sad. For so many years coming here was the only place to be, it was so safe, supportive, informative.

    I can't even begin to count the times that I came here because I no longer wanted to exist and how many times the posters would write such caring, non judgmental supportive posts to me "I care" would be the content of all these posts and guess what, I am still here.

    Please, please do not distroy this board, I miss it so much and there is nothing on the internet that is anything like the way this board has been.

    I have come back here with that same feeling "I care" and wanted to make sure that everyone knows about the importance of getting an mri of the brain.

    My story is CFS nine years all blood tests normal, just like most people here, nothing physical to indicate you are sick. My life is nothing, homebound most of the time unable to function in the normal world.

    My new doctor who is treating for the bacteria no one want to hear about did some testing and here are the results I recieved in the last week. They are shocking and should have been found years ago.

    Brain zaps as I used to call them which many people on this board had has turned out to be:

    MRI: Extensive white matter disease, numerous high signal lesions scattered throughout the deep white matter. Some of the lesions extend toward the gray/white matter.

    Am being referred to neurologist.

    Blood disorder Monoclonal Gammopathy, abnormal protein in blood which can cause multiple myelomas, this will require 6month blood checks. I did my research 1% of population have this and when you have it 20% chance of blood cancer. US population 304059724 1% = 92000 20 % of that means that 18500 people will have cancer.

    Eye problems which I thought were part of CFS: Turned out to Ilitis which requires emergency intervention using steroids. So far 50% loss of sight in right eye.

    As I said before I was where you are now with no knowledge of what was happening to my body. I urge everyone not to be satisfied with being tested once, recieve CFS diagnosis, but to go back every year and make them test you all over again.

    If this information helps even one person here I will be so happy for them.

    Please take care.

    maps [This Message was Edited on 09/04/2009]

    [This Message was Edited on 09/04/2009]

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    9/3/09 10:16 PM ty maps

    Its nice to see you again maps. May I ask if that was the first mri that you had, or did you have one earlier in your illness? My mri was normal. I wonder if some might have normal and then it changes in the course of the illness? The eye prob is sooo scarey too. Who diagnosed the eye problem? I saw an opthamologist who said my eyes are fine (they are not).
    My cognition is getting worse, but mri normal. Pleez come back more often maps.

    love glen

    9/4/09 3:03 AM

    Glenp: No, I was never given an mri before. The eye problem was diagnosed at emergency as this time I actually could not see at all(usually it has been that my eyes get sore and blurry). They treated me with antibiotics for the first two days when I could not see at all I went back and they immediatly froze my eye and booked the opthamologist for the next day.

    And yes the lesions are usually a gradual process. I would really be happy to come back with updates, although I post on lymenet and they have some great information together with an activisim board it is not the same as it was here.

    regards maps

    [This Message was Edited on 09/04/2009]

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  2. ulala

    ulala New Member

    iritis or uveitis, not ilitis? You should be able to get the vision back in your eye. Have you seen a good opthamologist? Thanks for sharing your story!
    [This Message was Edited on 09/05/2009]
  3. Bruin63

    Bruin63 Member

    i often read them, found them to be interesting, because of the similiar symptoms, of these dds.

    been tested every other year for lyme, so far it always comes back ok.

    take care

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