Be persistent, aggresive with your docs. if you can...

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

  1. MelG

    MelG New Member

    I learned don't cry, because then they automatically assume you are depressed. Bite your lip if you have to. Tell then through research, you have reason to believe, that the possibility could exist, that there are lesions on your brain.

    The place where I had my MRI is a prominent facility in Burlington County, New Jersey. They do good work. Tell your doctor you need a closed MRI. This will enhance the MRI to more define the lesions, if any.

    I imagine that most of you probably don't and that DOES NOT MEAN YOU ARE NOT SICK!

    If you're neurologist gives you a hard time, see another one if you can, if you think you might have M.S., call the National M.S. Society, they are willing to help.

    There must be, at once, a name change to these illnesses. There are way too many people suffering in hellish pain that are not being given any information.

    I was going to call my congressman's office. I usually get good response from there. What do you think? I've called him 3 times in the past and got action right away.

    MelG
  2. Combatmedic

    Combatmedic New Member

    severe vomiting. It was a last resort, for vomiting and headaches. It was after about 15 specialists, and before they found out my pancreas did not work well. I went to my GP with the information that another girl here in my town, around my age (about 4 yrs older, still, in her 20's) DID have something off in her brain (I still don't know what) and it caused her to become extremely ill, and she now takes medication, and is doing okay---about to deliver her first child, actually.

    So, anyways, my GP, who is a little off her rocker, but does listen to me, wrote the order for an MRI (w/o contrast) and sure enough........there it was.....my 7mm brain lesion, in the corpus callosum (typical place for an MS lesion.)

    So, now, 10 months later, I'm still under a neuro's watchful eye for MS. My last MRI's (in November) were the same, no changes, just the one inactive lesion on there. In November, I also had with contrast, and also a C-spine.

    I have not been diagnosed, but, my neuro told me on my last visit, I had three options.
    1) start on an ABCR, although, he didn't recommend it, he said it would make me sicker.
    2) go to the MS specialist that he plans to send me to anyways,,
    or 3) wait and see approach---repeat MRI's in 4 more months, and do a spinal tap
  3. joannie1

    joannie1 New Member

    I am curious about what you have written. I do believe i have read on other posts that you do have MS, I think.

    My question to you is do you think that this is something that some of us may have and that our Doctors are assuming it is just Fibromyalgia? I was in a car accident years prior to the past injury to my back a few years ago. I got out the old paperwork on it (the car accident) due to all the talk about MRI's of the brain here lately on the board. Anyways I read in Doctor reports that it stated there was some perminent damage with the accident. however some of the time after the accident I am unclear of events that took place. And my primary Doctor now does not have these records due to it being clear back in 1991 and different Doctors. I don't know i guess what to think of the entire situation. i really just assumed that this began in 2000 but now i can't help but wonder if it has been going on after all these years and the 2000 injury just through everything completely over the top for me.

    Anyways enough blabbering. Back to my question to you do you feel this is something to do with MS?
    Thanks for your input.
    Take care,
    Joannie
  4. MelG

    MelG New Member

    My hubby is a programmer. I used to do GIS mapping. Geographic Information Systems. Basically analyzying maps and data. Like put up a map of the United States and add points (say all the locations of people like ourselves who have this illness. Then add layers which include roads, major highways, state highway, watersheds, wetlands, EPA superfund sites, etc.

    He is willing to help me set up a page (sort of a registry). We will have to upgrade our Comcast probably to Pro. We need to run a server from our home so that other people with CFIDs & Fibro can see exactly where others are located.

    It's called spatial analysis. See fingers and body don't work very well. Intellect is intact (with a spell checker) and during times of non fibro fog.

    Man this is hell on earth.

    What all do you think about the idea?

    MelG