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Ohh Crap seems iam up the creek.

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    Ohh Crap seems iam up the creek.

    Been sometime since i been here and there be marked changes.

    Like most here getting answers to whats going on has been long and marked with plenty of its all in your head and you crazy. (seems to be many doctors fall back answer when they can't figure it out).

    I was except into the movement disorder clinic Toronto western hospital and Toronto memory program.
    Physical there has been some change but nothing huge except much of peripheral vision is messed up.
    Unfortunately there has been marked changes in my cognitive function with my short term memory ,executive function, focus and speech are all badly messed up.
    Which or course gets much worse to the point i sound like i had a stroke when iam in heat too long.

    Apparently out of MS criteria i hit all but one and in the space of 10 days i suddenly all be seeing two neurologists.
    Already been asked if i am willing to take medication.
    Of course with the marked progressive change in the last year without apparent attacks its expected i have the worst of the lot.

    For me its been a major pain made worse by the fact i have metal plates in my wrists which prohibits me from going into anything but the 1.5t mri's.
    They know i had lesions since feb of 2015 but of course they can't use the better mri to get a a better look so the diagnose was left open..diabetes, migraines,stroke,hypertension dynamiting diasie (have none of them except it seems the last).

    Also like many i been basically called crazy and had to wait tell i saw both a therapist and physicist which both said the doctor was full of it and i was shockingly normal just angry and frustrated.

    So after all the waiting i now at a point where i can forget where iam, find myself staring at my microwave not remembering how to use it, speech comes out in the wrong order or the wrong words come out.

    Only almost set fire to the stove a couple of times lol.

    Understandably i more then a little freaked knowing that there is little they can do cognitive changes.

    Hell iam a vampire now having to avoid the heat during the day or risk turning into fabo after one too many beer.

    I be really anger if i actually had the anger to be anger for longer then a few minutes.

    I bloody Alice Howland in the early stages from the movie still alice and i really don't want to get to the end of that movie in real life.

    #2
    Thanks for the update.

    But, sorry to hear of your dx and your trip "up the creek". Sounds like you lost your paddle, too.

    Wishing the best for you, in terms of treatment and prognosis.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

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      #3
      Nothing like seeing a alarmed worried look on the doctors face to install confidence.

      Irony is if they are right there nothing they can really do to even slow it down but merely treat the systems.

      I be mad if i could remember to be but i keep getting distracted lol.

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        #4
        Is there a 1.5T machine around you? It may be worth getting it just to see if any changes, especially if prior 1.5T was from Feb., 2015. While they can't get better look at existing lesions, could see if anything new in brain or spine, or if any old ones light up.

        The hospital near me has both 3.0T and 1.5T. Think they use the 1.5 on people who can't use the stronger force magnet and simpler things, torn meniscus, etc...

        Sorry to hear all you have gone thru. Hoping the weather change helps.
        Kathy
        DX 01/06, currently on Tysabri

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