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    Very worried by my symptoms

    Hi everyone,

    Hope someone can give info and advice.

    So you know I’m 50 and my mum had als in her mid 60s which started with foot drop, so this adds to my worry.

    For the last two months I’ve had continuous fasciculations in both legs / calf muscles and left forearm and bicep and odd possible twitch sensation in other bicep. No obvious weakness to start with but have gradually had pains or aching in left arm and especially thumb area. Can still pinch grip do everything etc normally but I do get definite pain aching , for example when tilting my coffee cup to drink from, and especially when fully rotating/circling my thumb. No injury or strain to explain this so I think something is going on.

    Also I have had the odd sensation of cramp/hard muscle in bicep and some shoulder tightness when my arm is above my head in bed for example. Comes with almost a buzzing sensation in shoulder and down/underarm at times.

    Also shortly after fasciculations started I noticed my elbow joints making a very audible crackle sound when fully bending. Is this anything people are familiar with?

    These are all new symptoms for me and difficult to explain.

    Guess I will have to visit the doctor but not feeling hopeful given my mum had als and my symptoms. I tell myself I t’s not clinical weakness yet , but is this a familiar onset story re my symptoms that others can recognise.

    Appreciate any reply.

    Many thx

    Nigel

    #2
    Hi Nigel,

    It does not sound like tipical Mnd onset.

    Dinner time

    But given your problems I would definitely see your doctor because you definitely have some problems and they might well follow this up with family history.

    Best wishes, Terry
    Last edited by Terry; 9 February 2020, 22:16.
    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.

    Comment


      #3
      Sorry to hear your mum had ALS, Nigel.

      Have you been to your GP yet, given you've been worried about your symptoms for 2 months now?

      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.

      Comment


        #4
        Hi

        Hope this is how I reply, thx for your comment Terry. Can I ask why my symptoms are not typical?

        Guess I did not see the doctor before now as I saw one web site comment from an als specialist saying if you have twitching/fasciculations do not automatically assume you have als, wait a couple of months and see if it persists or stops.
        Also if it is als what difference does an early diagnosis make, none really so hence I waited and hoped things might stop or clear clinical weakness would manifest itself, which I understand is failure to be able to do something.
        As it is I feel things have kind of progressed re my left arm / hand, but more to do with pain/ ache and tightness. Guessing perhaps the occasional pain and aching without clear clinical weakness is not typical. Main pain is thumb area related. Certainly a bit more shoulder tightness and it’s hurting more to do some things than it did say a month ago but reasonable / normal strength is still there. Almost feels like I should of sprained my thumb/hand only I know I haven’t.

        To my knowledge no one else in my family has had als but my mother’s father and brother died young and her sister had a Parkinson’s type illness. Not sure they ever got a proper diagnosis.

        My intention is just to keep going/working as long as I can but I will have to arrange a doctors appointment shortly.

        Thx.



        Originally posted by Terry View Post
        Hi Nigel,

        It does not sound like tipical Mnd onset.

        Dinner time

        But given your problems I would definitely see your doctor because you definitely have some problems and they might well follow this up with family history.

        Best wishes, Terry

        Comment


          #5
          Thx for taking the time to comment Ellie. Will hopefully see gp shortly. Best wishes, Nigel

          Comment


            #6
            Hi Nigel

            I am very sorry to hear that your mum had ALS. It is very common for someone to worry that they may have symptoms of motor neurone disease (MND) when they have had a loved one with MND.

            The symptoms that you describe would not necessarily indicate MND. MND doesn't cause pain as an initial symptom and nothing that you have said would indicate that you have any weakness in your muscles.

            Twitching is something that most people experience, we just don't normally notice it. The main cause of twitching is stress and anxiety or it can be caused by exercise. Twitching is very rarely an initial symptom of MND.

            I think as you have had these symptoms for two months that it's worth visiting your GP, even if it is just for your peace of mind.

            Please do feel free to give us a call on 0808 802 6262 if you'd like to discuss your concerns further.

            Best Wishes

            Rachel
            MND Connect Adviser
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]iation.org

            Comment


              #7
              Hi thanks for all comments,

              MND is real clinical weakness and it spreads insidiously from there with no pain in initial stage. That’s what the als forum seems to state repeatedly to people worried by their symptoms. I take it MNDConnect is of the same view.

              Can someone recognise similarities or give any further insight to my symptoms, fasciculations continue, I can still do everything but pain ache in muscles is more often even at rest , can feel like a muscle strain sometimes with throbbing sensation and some tightness as from working out but I’m not, and often aches come after doing a manual job, carrying heavy shopping , especially the day after when it never used to.

              Also hand suffers stiffness, arthritic type pains with aching in both hands but still far more pronounced in left hand and thumbs. Also had some odd pains in my ankles / big toe joints so I feel something widespread and joint related is going on. Guess its just more of what I’ve already described, though I feel it’s a bit more widespread now affecting all limbs ( but without a clear failure anywhere) and manual jobs take more effort to do and incur aching pains.

              Guess I want reassurance and to know if Als can sometimes start like this with a gradual deterioration weakening associated with pain / muscle discomfort aching in the early stages.

              Many thx for your help. Remain worried and may well phone in as well but any reply very much appreciated and might help clarify things for others as well.

              Comment


                #8
                Just got home and went to hang up clothes on dryer, bending over I can feel sudden bicep tighten / contraction. Sat down bending arms and feeling slight ache tightness In both biceps, perhaps slight buzzy sensation , but more in left as usual.Thumb just aches when used extended or rotated but it’s strength seems ok. Things like this are the norm now.

                Comment


                  #9
                  Still not seen gp by the way , guess I should bit was intending to wait till some definite clinical weakness presents.

                  Comment


                    #10
                    I am sorry you are so anxious, Nigel - it must be difficult for you to sit back and think about other things.

                    I really think you should see your GP, please make an appointment so you can discuss your symptoms and hopefully get some answers and reassurances. (You can't test yourself for clinical weakness)

                    MND Connect don't work weekends but your symptoms as you've described still don't suggest ALS, but do see your GP as living with such a fear can't be nice.

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

                    Comment


                      #11
                      Thx Ellie. Sat watching Ant and Dec feeling ache in both thumbs , rhs seems to be starting to replicate lhs symptoms.

                      Hope your right, yes aches and twitching are making me anxious and don’t want to hear the worst but no option I guess so will go gp soon.

                      Many thx

                      Comment


                        #12
                        Originally posted by NigelA View Post
                        Still not seen gp by the way , guess I should bit was intending to wait till some definite clinical weakness presents.
                        You really should see your doctor, Nigel,

                        It could well be something else that is treatable.

                        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.

                        Comment


                          #13
                          Hi Nigel

                          I am sorry that this is concerning you. The symptoms that you describe do not sound typical of motor neurone disease (MND). They could be caused by many other things. I think whenever any symptom is causing concern, that it is wise to visit the GP, even if it is just for reassurance.

                          Please do feel free to give us a call if you'd like to discuss your concerns on 0808 802 6262 Monday-Friday 9am-5pm.

                          Best Wishes

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

                          Comment


                            #14
                            Tried to see gp today but told they are only accepting emergency appointments today, never been told that before. . Will try again tomorrow. Meantime my left hand/thumb feels almost arthritic and doing the rapid finger test is slower, weaker and clumsy compared to the right. Shoulder/bicep also stiff/tight and pain/aches twisting to put my seat belt on. Will eventually post my outcome diagnosis and hope it helps others whatever it is. New symptom over last week is the repeated need to cough/clear my throat of phlegm - have had this on and off over last 12 months but has recently become much worse and constant now which has got me thinking again. Hoping it goes away and is coincidental , and not related to als in any way.

                            Comment

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