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Thread: looking for direction

  1. #1
    Forum Member
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    Apr 2018
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    looking for direction

    i have posted on here last year, my troubles are still going on
    jan 2017 stiffness in the pads of feet when i bent them
    mar 2017 when i touch my legs the feet vibrate like those cheap massage things that you stand on
    mar 2017 twitching started in calves and proceeded to go body wide
    aug 2017 noticed nose running when i eat and lots of mucus in the back of my throat
    summer of 2o18 noticed lots of saliva periodically during the day has become an all day thing
    my feet have all worsened and now that strange feeling is up to my ankles
    i have been everywhere as far as neurologist go,, mayo , johns hopkin, columbia presbyterian, oregon science and health amoung some of the other muscular neurologist. 7 emgs in total. which first two were clean and last 5 showed chronic problems, no acute or active. the clinical turn out fine. i have started having pain in the lower back and neck, i get sharp knife pains in my feet. twitches come and go but not a lot. i am going back to mayo a week from monday, they have another emg booked. i guess what i am asking is what would you ask of the dr. all the drs differ with their opinion some say lower back, other neuropathy and others say both. thank you for your time and consideration.
    mikael

  2. #2
    Forum Moderator MNDConnect's Avatar
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    Dear Mikael,

    I am sorry to read that you have been experiencing symptoms for over two years now with no obvious reason why.

    By posting on this forum I am assuming you are concerned that your symptoms may be those of Motor Neurone Disease (MND).

    Whilst it is true to say that twitchings or fasiculations can be indicative of MND, it is also true to say that they can be attributed to many other causes as well. After two years of symptoms it would be expected that you would exhibit weakness in one or more of your muscles which would seriously impede your movement.

    Sometimes an EMG will not pick up early changes related to nerve signal damage, but after having 7 over the course of several years it would be expected that the EMG would have identified any damage to electrical signals reaching the muscles.

    The EMG has suggested chronic changes but has your Neurologist explained why this is being picked up and what this means? It may be worth asking for an explanation of these changes at your appointment.

    As you are concerned your symptoms are MND related could you ask to be referred to an MND specialist neurologist who may be able to interpret your test results and give an opinion as to whether he/she feels the changes are related to MND or not.

    I wish you well and hope you are able to get some answers in the very near future.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser

  3. #3
    Forum Member
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    Apr 2018
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    Quote Originally Posted by MNDConnect View Post
    Dear Mikael,

    I am sorry to read that you have been experiencing symptoms for over two years now with no obvious reason why.

    By posting on this forum I am assuming you are concerned that your symptoms may be those of Motor Neurone Disease (MND).

    Whilst it is true to say that twitchings or fasiculations can be indicative of MND, it is also true to say that they can be attributed to many other causes as well. After two years of symptoms it would be expected that you would exhibit weakness in one or more of your muscles which would seriously impede your movement.

    Sometimes an EMG will not pick up early changes related to nerve signal damage, but after having 7 over the course of several years it would be expected that the EMG would have identified any damage to electrical signals reaching the muscles.

    The EMG has suggested chronic changes but has your Neurologist explained why this is being picked up and what this means? It may be worth asking for an explanation of these changes at your appointment.

    As you are concerned your symptoms are MND related could you ask to be referred to an MND specialist neurologist who may be able to interpret your test results and give an opinion as to whether he/she feels the changes are related to MND or not.

    I wish you well and hope you are able to get some answers in the very near future.

    With kind regards
    Jacqui Anderson
    Senior MND Connect Adviser
    thank you for the reply, all of the drs i've seen are neuromuscular dr, and almost all of them specialize in als. they really don't explain all the chronic changes. but i will be asking this time to explain why they are. i guess i do realize that after almost 3 years i would see a more drastic change.yes i am concerned about mnd. thank you for taking the time to answer.

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