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Thread: Still ko diagnosis

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  1. #1
    Forum Member
    Join Date
    Dec 2018

    Still ko diagnosis


    way back in January this year I first posted a thread regarding worries about mnd. I'm now 49.

    After an emg/nerve study at the hospital it came back as normal. They tested my right arm and leg.

    However, I'm still no nearer to finding out what is wrong 8 months later. My muscles have continued to get weaker and I've lost more weight without trying. My thighs, and forearms are now very thin and very weak. I'm having quite a bit of pain especially in my left forearm when I clench my fist and bend my arm (essentially when i grab anything and lift it). I struggle to lift anything with that arm as it hurts. Now almost all 4 limbs are thin, weak and hurt to use. I can still walk, go onto my tiptoes and walk on my heels. I dont have any foot drop just a pain in my right ankle when I walk.

    However, I have developed worrying swallowing issues. I can go through the swallowing process but it feels like food is just hanging in my throat and my throat muscles are not taking it down. Anything dry is a nightmare and I have to drink water to help. I feel like I will choke when I eat chicken. I have no talking or tongue/mouth issues.

    I have also developed an internal tremor and also an action tremor when holding onto something. No resting tremor.

    I'm now under a neurologist who did a few tests when I first saw him. He wants to do an MRI on my neck and spine.

    He stated I have normal knee reflex but weak ankle and wrist reflex.

    Pain and weakness is my worst problem. I have not noticed any fascilations at all but I continue to have wasting muscles.

    My brother died of lewy body dementia a few months ago after an very aggressive illness. My mum also died of dementia in 2006. She was diagnosed in 2000.

    I have a few questions if possible.

    Is it possible for the emg to be incorrect? Can this happen?

    Do you get internal tremors with mnd?

    Is it possible that i get painful weak and wasting i all 4 limbs and swallowing problems at once without any fully failing in over 8 months, Just very weak and painful? I can still use all my hands ok, they just hurt and feel weak when I do.

    What does weak reflexes in wrists and ankles usually mean.

    I've had this same pain in my ankle for 9 months. It's not got any worse and also no better. Is that a good sign that it's not a symptom of mnd?

    It's been a year since I first felt weakness in my muscles. None have failed yet. I can still use them except for the pain. Would I have noticed ed something fail by now if it was mnd?

    Obviously I also have the worry that I may have lewy body dementia especially with the tremors and having family history. It's just that I have no dementia and no rigidity or slowness of movement. I just have tremors and painful weak and wasting muscles.

    I do worry for the future. Something is very wrong and I'm getting worse. My neurologist doesn't seem to get how weak I feel. I told him I'm struggling with day to day life. I'm still working for the moment. My swallowing is very worrisome.

    I just worry for the future as I have 2 daughters and an amazing wife.
    Last edited by Shepster; 4th September 2019 at 21:44.

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