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    Been lurking

    Haven't interacted much lately but I've been following along with posts in this forum. I am no closer to finding out what is going on with my body. In the meantime, my mother - recently diagnosed with MS - is deteriorating rapidly. My symptoms now parallel what hers were at my age. And like her, multiple doctors have assured me that I do NOT have MS. In fact, they all seem quite certain that there is no physical cause of my symptoms. So, I'm crazy.

    The thing is, so was my mom. She was deemed crazy, too. A hypochondriac. A hysterical, weak-headed woman. So was my grandmother. But my grandmother was eventually diagnosed with MS. And now my mother has been, as well. So despite all of the reassurance I get from doctors telling my I'm a nutjob, I'm still scared.

    My mother's diagnosis came very late in life. I wonder what her quality of life might be like right now if she'd been able to get treatment earlier? She's fighting against using a wheelchair but truthfully she needs one, badly. This week's drama is her glassopharyngeal nerve failing. Her doctors are working to fix the situation as best they can but as of a week ago she cannot swallow solids. And as of yesterday, she can't speak.
    She called me last week, when she started choking on everything, when she could still speak, to remind me of her advanced directives. NO feeding tube or artificial nutrition of any kind, ever.

    I am deeply heartbroken to watch what is happening to her. And a childish, selfish part of me is near mad with the fear that this may be what I have to look forward to.

    I hate doctors so much right now. I loathe them. Useless, ignorant, superior, condescending [profanity redacted by author]. I want to scream at all of them.

    #2
    Hi Phoenix822,

    My mother's diagnosis came very late in life. I wonder what her quality of life might be like right now if she'd been able to get treatment earlier?
    I do want to let you know how sorry I am that your Mother is not doing well.

    I don't know if it will help you or not but, the first treatment for Multiple Sclerosis became available to the general MS population in 1993 (Betaseron). That was only 22 years ago.

    There is still much unknown about Multiple Sclerosis and receiving a diagnosis is not necessarily clear cut. There is no symptom unique to MS and no single test, by it's self, that can give a diagnosis.

    I am deeply heartbroken to watch what islp happening to her. And a childish, selfish part of me is near mad with the fear that this may be what I have to look forward to.
    It is important for you to remember that even if you are ultimately diagnosed with MS your course will more than likely be different than your Mothers. No two cases of MS are exactly alike. I have a friend who recently received a diagnosis of MS. She has a few cousins with MS and each one of those cases are different.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      I am in tune with you, Phoenix. I am frustrated with this miserable disease, but I realize that my doctors are at a disadvantage with the lack of good treatments. I wish you hope and luck. Someday, there will be good treatments and , maybe, a cure.

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