lifelover
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  • Just a heads up if someone is suffering similar symptoms than me. Now its been 2 years since all this started, so I could pretty much now put the worry of ALS away. I am still waiting time for neurologist. I have couple of things to ask him. My tongue and speaking is still impaired. Tip of my tongue is kinda "spasming" without pain, and when it does that, it is really hard to speak consonants.
    G
    Gopackers
    I can’t find your original post! What symptoms did you have ?
    lifelover
    lifelover
    I have twitching - for 2 years. Speech difficulties. Muscles are floppy all around, noticed easiest in face. Cheeks and face have lost muscle, they are thin and floppier, no healthy bulk anymore. Brain fog. Walking is not automatic anymore, i need to think how I walk so my left foot doesnt scratch the ground.
    lifelover
    lifelover
    I startle easy nowadays, if something touches me without me seeing, I jump like I had electric shock. Constant thick stringy mucus in throat, very hard to clear it out.
    Hi! I'm from Finland too and currently suffering from all kinds of symptoms. Seeing a throat doctor and possible swallow study next week. How are you now? Have you gotten any diagnosis? Best, Nina
    lifelover
    lifelover
    Moi! I have no diagnosis. I hope it stays this way. My twitching is getting lesser everyday, and I am still 100% fully functional. Still, I know that _something_ isnt right. I need to start to believe that it is not ALS because it 2 years exactly now from the start of the symptoms. What are your symptoms?
    lifelover
    lifelover
    And I should see ENT (knk) doctor too. I am having a constant mucus in my throat, and it is really hard if not impossible to get out with coughing and huffing.
    Hey, we have very similar symptoms. How are you doing?
    lifelover
    lifelover
    But my lumbar puncture didnt point towards ms or anything else either. Idk. Really hard situation. I dont have the energy to go to work really, but I just do go. I try to life my life to fullest. Gym, fixing my old snowmobile, play with my kids, play PS5, hang out with friends etc.
    A
    AudibleEthics
    Thanks for replying!! I’m very sorry to hear that. I know how you feel. Been told not MnD by 2 different neuro’s… but I am getting worse for sure. I have a bulbar EMG this Wednesday so hopefully I get some answers soon. Did you get a bulbar EMG?
    lifelover
    lifelover
    No I didnt get bulbar-emg. I might could get it on the very end of the year. Finnish healthcare is just busy right now that unless you are dying, you need to wait almost a year to get an appt. paid by taxmoney. And Ive already spent around 4k€'s visiting private doctors.
    Do you have jaw clonus/ positive jaw jerk?
    T
    Tomose
    Any new findings? Have you had anymore tests or diagnoses?
    lifelover
    lifelover
    Hi! Things are same as they were. Only thing that has came into play is that my nose is running 24/7, for the last 6 weeks.
    But on the other hand, couple weeks ago I did 7 muscle-ups in a row. So even my triceps, biceps, and the "wing" muscles of back have been twitching like crazy for a year, they havent lost their capacity for maximum power output.
    T
    Tomose
    Thanks for the update. Your symptoms are all so bizarre, hopefully that means it’s something else. When your next EMG?
    I have almost exactly the same symptons as you, but i'm yet to do a full medical investigation.
    lifelover
    lifelover
    Hi! Sorry about that.. it sucks. Tell me please when you have visited somebody, what is the result.
    Hello, how have you been ? Better I hope
    lifelover
    lifelover
    But, I am trying to stay sane, I guess. Clean emg and 4 different doctors have said to me that "you-dont-have-als". I need to stick in that during the negative thinking.
    ChronicPain
    ChronicPain
    Hi i have exactly the same symptoms with speech...how is it going now? I am a 30yo female.
    lifelover
    lifelover
    Hi. Sorry to hear. For me it is getting steadiky worse. The speech is the most scariest part. It is fluctuating during the day, and yesterday evening was the worst of all time. K's, s's, t's and j's are hard to say like we spell them in finland. In english spelling those are easier, they are not so hard.
    Hello, I have very similar symptoms with you. Please keep updating after you have some results etc.
    K
    KennyGuyte100
    I went a certified ALS Clinic few weeks ago saw Neuromuscular Neurologist. EMG, NCS and Physical Exam. Benign Fasciculations Syndrome diagnosis. My fasciculations started in my calf muscles 11/20/22. I hope I allow sufficient time to lapse before testing.🙏🏾❤️‍🩹💪🏾
    A
    anxi_12
    Good to hear! I think 99.9% of the time doctors are catching if anything nasty going on so I would try not to worry and live the life :) Did you get fascics after covid ?
    K
    KennyGuyte100
    I’m not sure it’s started after an ER visit for neck pain. I found out morphine and contrast was injected in my IV.
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