No announcement yet.

Urgent help/advice needed please

  • Filter
  • Time
  • Show
Clear All
new posts

    Urgent help/advice needed please

    Can you get fasciculations in your tongue and legs at the same time? Has anyone experienced tingling in their toes and fingers also? I can feel something in my tongue but lm not sure what it is😭 when l stick it out its moving also, lm terrified. Any advice would be very much appreciated.

    Hi TAPG,

    I am sorry you're so anxious. Anxiety is very debilitating and can take over your life - it is an illness in itself which needs treating.

    Your Neurologist was not able to reassure you your symptoms are not MND related.

    You spoke to an adviser on the MND Helpline, as well as asking about your symptoms on their subforum, but this too could not reassure you that your symptoms are not MND related.

    I am going to tell you the same but I doubt that I, a stranger on the Internet, will be able to alleviate your anxiety.

    I hope you go back to your GP and have a good chat about what's troubling you and find answers to your symptoms and appropriate treatment.

    Sincere good wishes,

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


      Hi again. I think we are maybe cut from the same cloth anxiety wise although I would say I have lessened a bit and you have heightened. I was sticking my tounge out last week as well and eventually thought ffs what am I doing? My tounge was a bit wobbly then i realised isn’t everyone’s? Today At work ive twitched in my calf, my arm, and dont laugh i thought my testicle 😂 before realising id just not given myself enough room to breath post going to the loo. I am just saying try to relax xx


        Thank you so much for replying. It's very hard not to get anxious when you have these symptoms. Like you l have twitches everywhere, not sure if this is common with MND. Some say if you can feel them it's a good sign so it's hard to know what's right and what isn't.


          Twiching is VERY, VERY COMMON among the the general popoulation - it means nothing and is certainly not MND in the absence of clinical weakness and very abnormal EMG test results.

          Please realise this is a Forum of people who have been diagnosed with this terminal illness and their loved ones, please respect that. It is not a general health anxiety forum.

          I wish you both good health but this MND Forum is not the place for either of you to hang out - you are very fortunate in that respect.

          Take care.

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


            Hi Tapg1

            As we discussed the other day, tingling and pins and needles are not symptoms of MND. These are caused by sensory nerves which are not affected by MND.

            If you stick your tongue out to look at it then it will move. Sticking your tongue out for even a short period of time puts strain on the tongue muscles as the tongue isn't designed for this. In my experience, tongue fasiculations tend to be quite obvious and can be seen.

            As we've discussed several times, you are not describing typical symptoms of MND and we have discussed your anxiety and treatment for this.

            No one on the forum can tell you whether you have MND or not. Please do give us a call again if you want to discuss your concerns. I'm happy to speak to you again so please feel free to ask for me when you call or any of my colleagues would also be able to help you.

            Best Wishes

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


              Ellie, lm very sorry l was under the impression that questions regarding symptoms could be asked. I was not aware it was only for people who have MND and their families, lm very sorry for posting about myself and willnt post again until l see my neurologist on Thursday. As l have said already my intentions was never to upset anyone l ve obviously taking the wrong information about this service. Please take into account how upset and worried l am at this moment in time and that's why lm asking questions.


                Hi TAPG1,

                You can get twitching in most places but I don't think that they happen at the same time. Maybe in a few areas of little part of muscles.

                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.


                  I just want to say lm sorry if l upset anyone with my questions last week lm honestly not that kind of a person. I have my appointment with a neurologist tomorrow at 12pm can ye keep me in your prayers please and God bless.