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    Frustration
    avatar
    cheesegrater posted:
    Not yet diagnosed but sure seems like it. I get bounced back between guesses of MS and MG with no tests so far panning out.

    Had 6-8 white spots on my brain MRI and was told they are non-specific. I asked what that means and was told they don't know what that part of the brain does. When I asked if the white spots should be there they said no...

    Unable to work, frustrated, angry. A host of symptoms from involuntary movements to rubber legs in the heat, disoreintation, facial spasms, ocular migraines, enlarged thymus. Lights and colors that aren't there. many more.

    Also having problems later in life, first attack that rendered me incapcited for 2 months happened at age 55.

    Twice out on temp disability, now expired. No pay, no help, no end.
    Reply
     
    avatar
    hackwriter responded:
    Dear cheese,

    Non-specific means that they are not indicative of one particular disease. A lot of MSers hear that in the early stages of diagnostic testing; we don't all start out with classic, unequivocal presentations of MS demyelination and clinical symptoms, so don't let that discourage you.

    Your age might be confounding the process, too, since the appearance of white matter lesions are more common later in life. Hang in there and get a second opinion from an MS specialist if you feel that the docs are spinning their wheels.

    And you might consider filing a claim for Social Security Disability soon.

    Kim
     
    avatar
    cheesegrater replied to hackwriter's response:
    Kim,

    thank you for your response!

    I have applied for perm disability. As you may know it's a lengthy process, I am lucky to have a loving and supportive husband, he is on disability due to a service connected injury. We're in the waiting period.

    My appt with the SS doc went well, but waiting for the determination. I was having a small flare when I saw her so she did see indicators. She was surprised I didn't have a diagnosis.

    I had one white spot in 2007 that my neuro said was something to be watched. Symptoms of tingling and numbness started when I was 40. In the years in between I became increasingly unable to function fully.

    I also have verticle double vision, which worsens with the use of my eyes, I have about 1 hour before I can't make out what's on the page.

    I will try to find an MS Specialist. My last neuro told me he couldn't help me, but didn't run any new tests. All of the subsequent Neuros from my big flare are basing their opinions on tests run 2 1/2 years ago. Having a hard time getting anyone to do new tests.

    thank you for your words of encouragement. I will keep putting one foot in front of the other (as best I can


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