Conflicting diagnosis

[John Husvar <jhusvar@xxxxxxxxxxxx>]

Hi,
    I'm Linda, and I was diagnosed with Parkinson's Disease on Oct., 1992,
    by a neurologist. He based his diagnosis on my initial left-hand
    tremors, chronic balance and coordination problems, and stiffness. I
    started taking Sinemet 25/100 3 times a day, then Eldepryl after a
    few months,and later Trazadone for sleep problems. I went to a rehab
    hospital for treatment in P.T., O.T., Communications, and stress-
    management. I had trouble with stores and libraries due to over-
    stimulation, driving during off periods, and mental confusion  when
    experiencing too much stress or conflicting stimuli. My tremors
    involved most of my left side, even my head at times. If a family
    member yelled at me, I had whole-body tremors that lasted about
    two hours. I also had visual disturbances, problems with swallow-
    ing, and diminishing voice volume. Sometimes I would have eyelid
    droop, but the medicine helped. I started taking Sinemet CR 50/
    200 and my dose was dropped to twice a day. I had a lot of on/
    off problems and often felt like I was in "lala land".

    I had an MRI in April which the doctor said showed a "shadow"
    in the third ventricle of my brain. We repeated the test in June
    but the suspected lesion he was looking for turned our to be an
    artifact. I went to another neurologist for a second opinion.
    This doctor had reservations about my diagnosis. Meanwhile, the
    first doctor decided to cease treating patients who were on
    Medicaid or similar programs as of July 1st. I decided to stay
    with the 2nd neurologist, as I liked his thorough approach as well
    as his willingness to spend up to one-hour of time with me  to
    discuss my situation and answer my questions.

    Meanwhile, my husband was diagnosed with Multiple Sclerosis after
    many years of unexplained illness and two industrial injuries in
    1987 and 1988. This happened three months before my diagnosis, and
    the first neurologist was also treating him, but my husband changed
    to the second neurologist a few months before I did. This doctor
    had the same reservations about the M.S. diagnosis. He asked for
    a psychological work-up from our psychologist before believing
    that the illness was not functional. This doctor relies on hard
    evidence whereas the first one accepts clinical evaluation such
    as the symptoms I manifested. (He did not believe I had essential
    familial tremors, although my hands always shake when in a raised
    position.)

    Oct. 4, my current neurologist decided to reduce my medications in
    order to evaluate my tremors. We reduced the doses by one-half for
    a week, then another quarter for a week, then none (of the Sinemet
    CR 50/2000). He took me off the Eldepryl Oct. 5th. That day, I felt
    as if someone had let me out of jail, I had so much energy and
    improved clarity. I spend hours hyperactively working outdoors
    painting my house, weed-whacking 1-1/2 acres of property, and working
    around my barn. I did continue to have the balance and coordination
    problems, but they were much-improved, especially when exercising
    outdoors. I was able to hike better and longer in the park as well
    as to ride my horse with more agility. (I was not permitted to ride
    for several months last year because we needed to get my symptoms
    under control. However, I did find that I could ride reasonably well
    even when I walked in a zig-zag fashion and bumped into things at
    the barn. In therapeutic riding, we learned that riding somehow
    helps the vestibular system, even for riders in wheel chairs.)

    My psychlogist at the rehab hospital thought that I showed some
    cognitive problems, and the communications treatment helped me
    with some of these problems. My problems impress me as being
    similar to those of a learning-disabled person, even though I did
    manage to get my masters degree in 1978 and have just passed the
    licensed social workers' test in Ohio. Nonetheless, I do have a
    lot of concentration problems, and I have had micrographia for
    most of my life.

    Going off all my medications for Parkinson's was a bit difficult,
    and I don't feel I have the function that I had with the 1/4 dose.
    My doctor has just stated that I do not have any identifiable
    neurological diseases, including PD. I still think I have some
    type of organic problem which is exacerabated by stress. Can
    anyone offer some insights?    LInda

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