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  • Hey, sorry I just noticed this message now.... I've been off and on for the last month, trying to move on. I have body wide twitching, which has dropped off significantly in the last few weeks. Tightness in my left calf, small muscle spasms in my hamstrings. No noticable atrophy, although I have lost weight over the last six months, which can't be attributed to any change in diet, exercise or stress level. I am not pursuing any medical diagnosis at this time. This forum has been helpful for me in that regard TBH. But when I read accounts such as yours and other people's diagnosis stories, I'm confused and unsettled by it all because clearly people have gradual weakness as an onset condition, or atrophy before weakness, etc. From what I can tell, if you think you have ALS,continue pushing for a diagnosis of something. It seems to me there are probably many unnamed neurological conditions that exist that many people suffer from and can go for many years with no answers.
    Vera, I've read your post today, and I'm sorry you are going through this. I don't think you should be surprised at the response you got here today. What you seek is answers and you clearly won't get them here. You present symptoms that seem like ALS, could be other things, but the clean EMG means you don't present in a classical way, therefore the party line here is clear.

    The best advice has been given: keep returning to your doctors and demand answers. Join a support group for the neurologically un-diagnosed if one actually exists and if you find one let me know.

    Another thing: if you have not sought help for your obvious overwhelming anxiety please do so. I am medicated and it's the only way I stay functional while I sort this out.
    Do you have an email adress? Maybe we can share some more information. And possibly be a support system towards each other.
    I twitch all the time - no atrophy yet. But yes I have weakness. My clean EMG's are what keeps me going - but just don't know why I'm not getting better.
    Are your muscles twitching tho? Are you dealing with any weakness? Is there atrophy anywhere, that is noticeable? I mean you've had four clean emg's, that's a good look
    My last doctor said it is in no way neurologic - makes me happy when she says that - but then i go to wrok and can't type -it's so weird
    I'm dealing with clear atrophy in the hands between my index fingers and thumbs. It's scary. Do you have twitches ? I twitch all over.. Or atrophy anywhere in your body? Are doctors thinking anything other than neurology? This all makes me sad :(
    My legs are butal. Pain is an understatement. My toes have hurt also but that was a while ago. Mine all started with arm pain. The weakness is setting in now.
    No pain in the beginning in the fingers but certainly have had it since. My issues all started in my right forearm. But now I'm involved in many areas. I saw Susan Shin. She's good. She will not be doing the EMG tho which is unfortunate - they let a resident do it who is observed by another neuro. Def one of the better doctors I saw.
    I'm in limbo Atsugi. Do you know what other avenues I should start considering? Always , thank you for your time.
    Vera, your doctors are not seeing ALS. We certainly can't second guess them.

    You need to continue working with your doctors. Ask them your questions.

    With our limited resources, we support ALS, which you have been determined not to have.
    New York Pres. Hospital. Have you had emgs done on your hands? How about we share each other's e-mails maybe we could communicate, and support each other on whatever is it that we are going through.
    I'm struggling with my fingers and speech as well. We are supposed to have the best doctors here in NYC - where was your last EMG done?
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