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Advice Please?

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    Advice Please?

    Dear all,

    I am new to this forum and am looking for some help and advice after months of being no further forward.

    I am not diagnosed, however, since November last year I have been concerned regarding a host of symptoms I have been experiencing. I can, in hindsight track these symptoms back longer than this. I understand that you are not doctors, nor in a position to be offering medical advice, however I would appreciate your input as I am going through a tense period of anxiety wondering if what I am experiencing could possibly be MND.

    For a few months since around summer last year, I was struggling with feeling very achy in my joints, and in particular my wrists. I am (was, before this all started) a very active person training in the gym a lot and running often. I also started to struggle with swallowing food in that it was going down very slowly when I swallowed. I also began to experience muscle twitching in my abdominal area, frequent need to wee (especially in the night) and other symptoms like excessive sweating. I thought nothing of it and managed symptoms as you would.

    Then, in November last year, I started experiencing quite aggressive muscle twitching in my calves, which then spread quickly to other areas (abdominal, back, arms, all over legs). The classic happened - I then googled my symptoms and it sent me into quite a flurry of panic. Since then, I have experienced burning sensations in both legs (mostly calves), upper back and arms when using them, finding my limbs tiring very quickly yet still able to function. I also started to experience bad pain in my legs - like bubbling, electric shock type pain and also a sensation of something crawling under my skin. My balance was affected too and I started to find walking very painful. I was a very regular gym-goer and have been for 10 years, but stopped very abruptly due to the twitching and pain I was experiencing, so it is difficult to assimilate if the weakness I am feeling is due to stopping my physical activity so abruptly or not. The symptoms then progressed to tingling sensations in my limbs, especially my legs and my left hand and thumb. I have also been having some trouble swallowing (I have been having issues with this for over a year now), in that food seems to travel down very slowly, and I often cough a lot after I eat. In the last few weeks, I have also developed a pain in my chest when breathing and often feel I am becoming short of breath as well as a very sore left wrist when lifting things. I have no loss of function but a definite weakness/pain in my wrists which has been ongoing for around 18 months. I live with my partner who is aware I am concerned about MND, however, is in agreement with the doctor that anxiety and stress are playing the major role in all of this.

    I am still twitching all over, especially in my calves and legs, arms and shoulders - since the beginning of November last year and my clicking jaw (which I have had for a few years) is getting worse - often locking half open. I am now experiencing fatigue and pain at the back of my tongue. I am of course concerned that this could be related to MND too, but appreciate it could be a host of other things as well, as I have no first hand experience of the process.

    I have visited both my GP (several times, who has treated me for anxiety and panic disorder) and two Neurologists (not a specialist in any particular area) have performed basic strength and reflex tests and say all of this is due to stress/anxiety yet ordered tests to rule other organic conditions out. However, in hindsight, I have been experiencing symptoms for quite some time before November and I am wondering if you can help with reassurance in any way as the EMG and NCS I had been referred for in May this year have been cancelled due to COVID-19 and my private healthcare insurance cannot help me at the moment.

    I'm not even sure what you can help me with, if at all, but I am stuck in this 'limbo' situation now and am unable to see how I can move on until symptoms either go away, or I am able to receive further testing. Of course, I admit that I do have anxiety and have had for quite some time (over a decade) but do not want to be caught in a 'boy who cried wolf' situation due to my mental health condition. I have managed to get my anxiety under good control now, and expected my physical symptoms to pass as a result of this, however, they are not passing but accumulating more and more.

    There are various 'warning signs' I have seen in the past few years as well, but they are mostly sensory such as lower back pain, consistent sciatica for years, trapped nerves in shoulders, neck pain and various other twinges and niggles. I also struggled a lot with foot cramps for quite a long period of time around 12 months ago. I should mention I am 35 years old and female.

    Do you have any advice or reassurances you could give me at this time? I am extremely anxious, which of course I do believe is exacerbating already present symptoms.

    I appreciate that this is not a conventional post in this forum, however, I was unsure of who to reach out to for support or advice given the current situation that we are all finding ourselves in. I am in awe of your courage and strength and thank you in advance for any support or advice that you could give me in this time of worry.

    Hi Bondi,

    I'm sorry you're going through this.

    You've had face-to-face consultations with 2 different Neurologists, both of whom examined you and thankfully found nothing suggestive of MND, which is great news.

    You're also seeing your GP, who knows you, and who also wasn't concerned about you having MND.

    Please try to be reassured by these professionals and keep working with your GP sto understand what's going on with your body.

    The symptoms you listed aren't suggestive of an MND and I hope you soon get answers and treatment for what you're experiencing.

    Take care.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


      Hi Ellie,

      Thank you for taking the time to reply to me.- I understand that posts like mine may not come as welcome in such a forum however, I am not sure where to turn :-( I cannot seem to gain relief of my symptoms and things do seem to be getting progressively worse. I have a telephone appointment with my GP tomorrow as this has now been ongoing for many months - I'm not too sure what he will be able to come up with due to the restrictions in place but I am hoping to gain some perspective as to what happens next.

      Thank you again for your time, I really do appreciate it a lot as I feel very alone at the moment.

      Sending all best wishes,


        Genuine posts are always welcome, Bondi, and we do our best to answer any questions asked.

        Hopefully your GP can allay your fears tomorrow.

        All the best.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


          Many thanks again, it's much appreciated.

          Take care


            Boni sun I wish I could personal speak to you am going though the same has you. I've looked for private message but can't find one


              Flowers, I believe that we cannot send private messages as new forum members.

              Feel free to leave your email address with me and I can send you an email if you'd like to talk to me. I can't say I will have any answers for you, though.

              Sending best wishes,


                [email protected]


                  I have dropped you an email, if I were you I would perhaps delete your post now so as your email address is not public.


                    Just a word of warning and caution guys. This site is open to all so I suggest you delete any content with personal information such as email addresses.

                    Best wishes,
                    I’m going to do this even if it kills me!