Kfitz

Kfitz

Member 34 From New York
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  • J
    It's been a while, do you have any update? I have some similar symptoms to you. especially jaw/teeth chatter things
    A
    How are you? Experiencing many of the same symptoms.
    Kfitz
    Kfitz
    I mean not good at all. I’m managing with my new normal. Things have progressively gotten worse for me. Still no answers. Reach out on Reddit. We can chat there.
    A
    artis
    Hello, how are you doing? I hope you are doing well and enough time has passed to prove it is not the big bad!
    lifelover
    Hello. Things have escalated, and now I'm actually pretty sure that its ALS that I have. Is there any other way to discuss with you because this messagin is so hard to manage with the letter limit.
    Kfitz
    Kfitz
    I’m on Reddit and I’m also pretty sure I have ALS as well. I’m scheduling an appointment with Mayo Clinic.
    lifelover
    Hi! I just wanted to come and say that I am 100% sure that you dont have ALS. I have been here 12 months, and red 500 different ALS cases and NONE of them started this way. We def have something going on (just the same symptoms with me) but not ALS. I have been in this state for 17 months now, and I am still riding MTB, running, playing tennis. I think it is somethin systhematical or autoimmunish.
    View previous comments…
    Kfitz
    Kfitz
    I’ve been the same really. Thanks for reaching out. Still functioning in all the way I was. My husband and I are traveling around Europe right now and although my symptoms are very annoying, at this point, they haven’t stopped me from any activities. I’m sorry you’re struggling too. I am with you with the swallowing and saliva. So frustrating!
    lifelover
    lifelover
    Yeah. Frustraring it is. Let us know if you have any answers in the future. I will do that too. I think my next appointment should be within 2 months. We have long waiting in Finnish healthcare system right now.
    Kfitz
    Kfitz
    Will do! I have an EMG the 5th. I will let you know then.
    L
    Hi Kfitz,
    Are you taking any medications for anxiety? If so, your symptoms sound very similar to mine. I had a serotonin reaction. Teeth chattering, twitching, weakness, jaw snapping shut when falling asleep, etc.

    I just thought I would ask.
    Kfitz
    Kfitz
    All of my symptoms started before taking and medications. The anxiety from my symptoms caused me to go to a Dr. They gave Valium for the anxiety and the involuntary movements- that has helped with the jaw snapping shut, but I still have jaw clonus throughout the day. They started me on an antidepressant Zoloft, but I stopped that medication after 2 weeks.
    Kfitz
    Kfitz
    The Valium 5mg before bed has been a life saver. I was constantly being woken up by involuntary jaw movements and muscle twitches and spasms in my legs, arms, and chin. With the 5mg of Valium I sleep completely through the night. They tried baclofen, but I couldn’t tolerate it. I was so sleepy all day long.
    CelineEs
    Hi Kfitz,
    I’m sorry you are going through this, I understand your frustration. I going I think through similar situation, I would said even worse. I‘ve been told Not ALS by two neurologists, But I keep getting worse. The last nerologist I saw didn’t want to test bulbar area. IHave all kind of issues, swallowing has became a nightmare,Hope you are able to find answers and get well soon.
    Kfitz
    Kfitz
    Hi Celine,
    I hope you get well and get your answers soon as well. I am having an EMG of my bulbar area today. Hoping for good news.
    CelineEs
    CelineEs
    Thank KFitz,

    Hope the EMG went well.thank you for your wishes. I’m overwhelmed….😞
    lifelover
    Hi you! I just saw your symptoms and I have tears in my eyes. Finally somebody with the same weird jaw-shutting thing, not happy for your symptoms though. For me it has happened now tens or hundreds of times. It happens mostly when I am just about to fall asleep, or just fallen asleep. Around same time than "normal" hypnic jerks are being seen.
    • Like
    Reactions: CelineEs
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    lifelover
    lifelover
    Speech problems continuing. I have noticed that if i do small exercise, for example 12X4 bicep curls, my speech gets better for awhile. Idk, I feel like I have LMN dominant mnd, but at other times I believe I am "healthy". But the atrophy is real, shoes are loose, ankles are way smaller than they have been etc.
    lifelover
    lifelover
    Only done 1 emg 6-7 months ago and it was 100% empty, not any fasics or other marks done. nowadays I get also weird strong fasciculations in my abdomen muscles, they last short time but they are intense, like thunder strikes.
    G
    Guyinthebusa
    Same here, been losing crazy weight, skin sagging and insomnia with no appetite. Seeing a lot of research that it may be Covid related, so hopefully this will turn around for us soon.
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