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Still ko diagnosis

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    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; 4 September 2019, 21:44.

    You poor thing - what a worry - however, although I am not medically qualified I would state it is very unusual (in early stages) to have that sort of pain in MND. I am sure you are very anxious to get a diagnosis and hopefully treatment. It sounds really awful what you have gone through with your family members with dementia - another terrible disease - but from my knowledge pain is not applicable to dementia either. You are obviously going to be very anxious and that could affect your swallow etc. Have you thought of going to your GP - he may be able to prescribe medication and/or counselling whilst you wait and find out what is wrong with you. I appreciate you don't want MND and from what you have said I think that is unlikely. Take care


      Hi Shepster,

      The EMG can be read incorrectly- it happened to my Gran before the test was repeated and then she got the correct diagnosis of MND.
      However, I haven't heard of anyone experiencing the kind of pain that you're currently feeling. It might be worth mentioning Polymyositis to your neurologist- a lot of the symptoms mimic MND, including the swallowing issues (of course, I'm not a doctor, but it couldn't hurt to rule out different conditions, if at all possible).
      "This, too, shall pass"


        Hi Shepster

        I'm sorry to hear that you are still concerned about your symptoms and haven't had any answers.

        EMGs, as with any test, can be misinterpreted although it's likely that this happens fairly rarely.

        Some of the symptoms that you describe are not typical of MND. MND can be painful but not in the way that you describe. Tremors are also not usually a symptom caused by MND. The swallowing difficulties that you mention are also not typical of MND. People with MND do often experience swallowing problems but, again they don't tend to be in the way in which you describe them.

        After a year, you would expect someone with symptoms of MND to have much more distinct features of the disease which you don't seem to have.

        I am sorry as it can be understandably very worrying when you have symptoms but you don't know what they are symptoms of. Only a neurologist would be able to give an answer as to what may be causing your symptoms and we would always suggest that if anyone has symptoms that are concerning them, that they speak to either their GP or neurologist.

        Please do feel free to contact us here at the MND Connect helpline if you would like to discuss your concerns. We speak to lots of people who are concerned that they have MND and we are often able to reassure people or point them in the right direction for help. Our number is 0808 802 6262.

        Best Wishes

        MND Connect Adviser
        MND Connect
        Contact us on 0808 802 6262 or at [email protected]


          Hi Shepster,

          As I have said before it certainly doesn't follow any pattern of Mnd that I have heard of.

          Can you swallow water OK?

          My food gets stuck in the throat and I can't drink too clear it. I am better off eating a very little more. Try to chew things well and only have a little bit at a time. Make sure you clear your mouth each time.

          There are things that are easier to eat and drink.

          Probably best that you highlight the swallowing issue with your doctor etc, you can get drinks prescribed if you have bad issues.

          Love Terry
          TB once said that "The forum is still the best source for friendship and information."

          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.