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I'm worried as I'm displaying symptoms that I can longer ignore

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    I'm worried as I'm displaying symptoms that I can longer ignore

    Hi there,

    I wanted to write my concerns out here, seeing as you all provide such helpful insights and information.

    For the last few months I've experienced a set of symptoms. And they've progressed more noticeably in the last few weeks. I’ve got right arm weakness, right leg weakness, that is leading to a very heavy foot that often leads it to buckle when walking. My right hand has a weak grip and feels really odd.

    I've also got persistent fasciculations in both limbs. The left leg and left arm are now also showing signs of weakness and the twitches are becoming more noticeable in them.

    I have recently observed my voice begin to stammer and tremor along with my body's fasciculations. My eye sight is also quite blurry when I scan a room, or situation. And it often feels like I'm breathless, especially at night when lying down. Lower back pain is also present.

    I’m 26. My mother who's 65 was not so long diagnosed after having symptoms for over a year, and a very noticeable dropped foot.

    From what I'm aware, my mother is the only one I know has had a definitive diagnosis. I do not know my father's side, but know his family, as well as my mother's has had dementia and Alzheimer’s in its lineage but no other case of MND that I know of. So technically I don’t know if it would be familial MND that I could possibly be presenting, or just an unbelievable case of two family members having sporadic MND at the same time.

    My mother has not yet been gene tested, but I will encourage her to do so, as I realise that will be an important step in the process. My GP is attempting to fast track my neurologist app, but it's seemingly going to be another 3 nerve wracking months until I'm in there - probably with worse symptoms. At this point, I'm praying it's CIDP or something else.

    Any help, much appreciated, I'm very anxious currently and feel absolutely awful for my brother as he may have to care for two people on his own if I am diagnosed.


    I’m sorry that you and your mum are struggling. I hope that either you or your mum get a genetic test, mum preferably. It does sound to me that you have a neurological condition. But I’m not qualified to diagnose anybody. I hope that you can get your GP to fast track your neurology clinic appointment. Give your GP a ring if you can. Good luck and take care. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.


      Good morning Darius

      Welcome to the forum and do not apologise for asking questions.

      Along with Lynnne I'm not qualified to diagnose and I can only sympathise with you that at this time it is quite difficult to see a neurologist for a consultation.

      If you are near a hospital with an MND centre you may be able to get a digital (e.g. zoom) consultation with a neurologist although I guess you will need a GP referral for this - I relate to King's College Hospital at the moment and my own neurologist operates in this way.

      Obviously he could not do his usual checking of my reflexes or refer me for other tests but an experienced consultant can recognise the shapes of the different diseases – for example my hand is now a classic MND shape.

      MND is still quite largely unknown disease and as you say if there are two people in a family with MND it could either be two sporadic cases or they could be a genetic link. I do know of one family with two sporadic cases who went through the difficulties and expense of genetic testing to find out that it was indeed sporadic.

      So for you it seems to me there are two questions which you should really address in order.

      Firstly have you in fact got MND as diagnosed by a neurologist?

      Secondly is there some genetic inheritance?

      If you want to message me privately I may be able to point you to an MND centre that can help you or indeed you can find these centres on the MNDA website - you may be able to assist your GP in making a contact for you


      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

      "Things turn out the best for people who make the best of the way things turn out"


        Dear Darius,

        I am so sorry to hear you have been experiencing symptoms and are concerned they may be because of Motor Neurone Disease (MND).

        MND can cause weakness in the limbs as well as speech and breathing problems, but not usually all of these in such a short space of time.

        You do sound as if you are extremely anxious and some of the symptoms you mention could be due to this acute feeling.

        Could your GP help by prescribing medication to help relieve your anxiety?

        If you are diagnosed with MND, this will raise questions as to whether there may be an inherited factor involved and at that point blood tests would be taken to see if a mutation is present in your family's genetic make up.

        You have said that your GP is trying to fast track your appointment, did he/she detect any weakness in your arms and legs?

        If you would like to talk about your concerns, please do call our helpline to speak to an adviser, the number to call is, 0808 802 6262 and we are available Monday to Friday 9am-5pm and 7pm-10.30pm

        With kind regards
        Jacqui Anderson
        Senior MND Connect Adviser
        MND Connect
        Contact us on 0808 802 6262 or at [email protected]