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Thread: How long from symptoms onset to diagnose?

  1. #1
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    How long from symptoms onset to diagnose?

    Dear people of the forum!
    Frstly i want to apologise for my english.
    I am 31 year old female having symptoms for almost 4 years (will be 4 in late June)
    I started with almost unnoticable atrophy in my left thenar muscles, left scapula muscles, left foot muscles, left gastrocnemious muscles and left tongue (some minir dents that appeared trough these 3.5 years).
    Iím mainly fasciculating and sometimes cramp in foot and calves but only in some positions. I can feel some strange feeling on my to gue, and sometimes feel fasciculations there, but no doctor has ever saw my musclees fasciculate nor in tongue or any other body region.

    I can still do all daily activities, althoug the atrophy is more and more visible years passing. I have been to several neurologist, some claimed to se asymmetry but never called it an atrophy, some said that they donít even see it and so long and so long... Iím experiencing twitching all the time since than. I had several EMGs which has some larger amplitude, but silence at rest. And neurologist claim it normal. But still my problems are real, my husband said he can see a little change over the years, but nothing major.
    My neurologist on last appointment called my tendon reflexes ďrather briskĒ all over, some other neurologist years ago called it normal, some colled it upper body normal, knee brisk... so it varies from neurologist to neurologist.
    I know that there is high possibilities that this is not mnd, but I am hopeful that some of you very knowledgable people can give me some advice on what could it be?

    Since I have those symptomes for that long and no doctor has found anything worriesome could it still be mnd? Did anyone here had symptoms without diagnosis for so long?

    I know that no one can diagnose me, but if anyone can give me some some advice i would be very grateful!

  2. #2
    Forum Member Dude's Avatar
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    Dott Where do you live ?. Dude

  3. #3
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    Quote Originally Posted by Dude View Post
    Dott Where do you live ?. Dude
    Iím from Budapest, Europe.

  4. #4
    Forum Member Ellie's Avatar
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    Dott,

    I don't understand a few things...

    1. Why did you not post your medical report which cleared you of ALS?
    2. Why did you not post the results of your EMG, which was normal, and cleared you of ALS?
    3. Have you such little respect for those of us struggling 24/7 to live with ALS that you thought, having said goodbye to one forum in the knowledge you were in the clear, you would pose the same introductory question on this forum without posting the reports 1 & 2 above?

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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