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Thread: Husband May Have MND

  1. #1
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    Husband May Have MND

    Hi Everyone,

    My husband (age 63) has wasting of the muscles in his hand and recently saw a GP. He has been referred for Nerve Conduction and EMG Tests . This is going to be done early December. My husband had an Uncle who had MND and passed away around 10 years ago.

    I was not present at the consultation with the GP as I was abroad at the time so I don't know exactly what was said but when I returned my husband told me it is suspected MND.

    So right now we have no diagnosis as such but are very scared for the future. Like most people, I have little knowledge of MND although I am learning a lot on this forum and the mnda website.

    Jean

  2. #2
    Forum Member Terry's Avatar
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    Hi Jean and welcome to the forum;

    Sorry to hear about your husbands hand problem and it's not nice being told that he might have Mnd.

    Does he have any other symptoms and how long ago did he notice it?

    I am surprised that he was told by his GP that he suspects Mnd as many specialists would not say that until all the tests are done.

    GP's generally have very little experience of Mnd and many of them have none.

    Lets hope it's something else but I would be tempted to see that GP, probably with your husband to clarify things.

    Best wishes, 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.

  3. #3
    Forum Member Ellie's Avatar
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    Welcome Jean.

    Muscle wastage may be symptoms of many conditions and we all hope it's something other than ALS/MND. Was that why he went to the GP?

    I know the 2-3 week wait for the EMG will drag but I hope he has a date for a follow-up appt with a specialist Neurologist soon after?

    Fingers crossed for you both.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
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    Hi Terry and Ellie,

    My husband saw a GP who I dislike greatly. She told me last year that a trapped nerve in my neck (I had it before and symptoms were the same) required an x ray to rule out referred pain from lung cancer. I had stupidly asked for a referral for physio as that had done the trick 3 years previously. She performed no physical exam. I went to my physio anyway and he couldn't believe what he was hearing. He performed a physical exam and confirmed that it was again the same nerveC5 - T6 spinal area. She could have scared me to death with that sort of diagnosis. I refuse to see her as I don't like her way of speaking to patients and have doubts about competence. Then again I feel that way about any GP.
    Tony seems very tired and lacking energy lately. He doesn't walk well. He never has, always stomped his feet but these days seems to shuffle rather than pick his feet up. Quite mobile but seems to use the car more than he used to. Also has had a cough this last 2 years, constantly clearing his throat. Loss of grip and strength in affected hand and arm. Other side seems fine. He tends to keep things to himself. He isn't a man who consults doctors often so something made him do it while I was away but he isn't saying.

    As far as I know it is only tests that have been arranged so far. No mention of consultant referral yet. I assume we wait for the results and go from there.

    Jean

  5. #5
    Forum Member Terry's Avatar
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    Hi Jean;

    You have some crazy GP there, most GP's are not that way and air on the side of safety rather that commit to a scary diagnose.

    If she thinks that Mnd is a possibility, them she should refer Tom to a Neurological specialist as they are used to dealing with those sorts of problems.

    EMG is one of the right tests but it normally comes later on after Bloods, MRI of brain and spinal fluid test.

    These tests can all rule out other things.

    What hand is affected and do both legs have trouble or is one side much worst.

    Please remember we're no experts, well I'm certainly not.

    Love Terry

  6. #6
    Forum Member Ellie's Avatar
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    Jean,

    The EMG is done by a Neurophysiologist but then is given to a specialist Neurologist, not necessarily in MND, but in neuromuscular diseases, who will also do clinical exams and run other diagnostic tests.

    This is because an MND diagnosis is given only after ruling out mimic diseases/conditions. Unfortunately there is no definitive test for MND, which can make diagnosis difficult.

    Any questions, please ask and we'll try to answer them, but some can only be answered by a Neuro.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #7
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    Hi Jean and welcome to the forum,

    I am sorry that MND is suspected for your husband. Before my MND was confirmed in March 2018 I had 2 EMGS and nerve conduction tests . I had 3 MRI scans and a
    lumber puncture and lots of blood work. Even after all that I was referred for a second opinion to another MND neurologist who repeated the tests and there was some discussion about what sort of MND I have.

    What I am trying to say is that there is no definitive test and it is really hard to diagnose, even by a neurologist and people present with different symptoms.

    It's really hard to wait for tests and then results but fingers crossed for you.
    Best Wishes to you both
    Love Debbie x

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    Hi All,

    many thanks for your kind replies.

    My first reaction when Tony told me was shock, closely followed by does that woman even know what she is doing? She has ordered 2 tests and one can only assume that she thinks she is making a diagnosis. Everything I have read says that this is a complex diagnosis and it isn't one to be made by a GP! You all confirm my thoughts about this.

    We are going to keep the appointment for the tests, they may shed some light onto what is going on with him. Once we know the results are back we will go to see a different doctor and request a referral to a specialist in neurology for review. My next step will be a complaint about her making people frightened, worried and anxious because she overstepped the boundary.

    Thanks again, I will report back when we know more

    Jean

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