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Early stage continuous aches and pains

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    Shepster34 - my "best" limb is my right arm. Virtually unaffected in comparison.

    I used to do quite a bit of gym work and weights. I am now totally unable to lift a full kettle in that arm (a full mug is a challenge) but I have no pain or atrophy yet.

    My left arm is worse. I cannot lift a piece of paper between finger and thumb. I do get some aches (usually after a long day and the muscles are tired) I have very minimal atrophy.

    The loss of function and weakness is dramatic for me. Far more than any pain or atrophy. I'm exhausted after 3 jigsaw pieces (which are a challenge to pick up too).

    I hope this gives you some indication of what loss of function is like. I rely on carers for almost all activities.
    Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

    Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


      Thank you. Did you get weakness in your shoulders and arms before your hands?

      For now i can still move my upper left arm and shoulder but its getting worse quite quickly. I have no stamina or power and it aches to move it. Ive also started getting aches in my shoulder blade area so i think the weakness its now spreading. Even keeping my left arm on the steering wheel causing aching. I can no longer lay on my left side anymore way too painful.


        Shepster you will never get the exact answers that you're looking for. MND is a highly personal disease that progresses differently for everyone. No one can tell you how yours will or will not progress. There are similarities but no exact disease pattern. Pain is very rare with this disease until major atrophy, but I have heard of someone with pain from onset and a diagnosis on another website. I am in a similar situation where I am am being followed up by neurology with no exact diagnosis but I do not approach people here with concerns about symptoms or progression as it's not fair to offload our anxiety onto these people. I am sorry that you're suffering and hope that you can find answers soon.
        Last edited by Petey; 18 June 2022, 17:38.


          Shepster34 I had pain in my shoulders, but found out it was due to using a cane. Since I’ve switched to a rollator walker the shoulder pain is gone. I get cramps in my leg, from spasticity. This is painful, but eased by using heating pads (I have a heating pad in every room of my house, lol 😂)
          Other than that, not really dealing with pain (thankfully 👍🥳). Mine started in my left foot, tripping and with my toe catching when I walked. My latest EMG has shown a change from my first EMG, but is still good. So far I’m showing UMN degradation.
          Have you had your neurologist appointment? They are truly the experts, and like it has been said before…it seems to present so differently in everyone. It is also very rare, so the math supports you not being affected.
          People on the forum will not and should not be expected to reassure you though. For some, they have been battling this disease for a long time and honestly it is too much to ask for such reassurances from them and unfair.
          I wish you peace and I hope you find answers ❤️💝💕


            Important Note:

            The heading of this thread is extremely misleading - this member DOES NOT have a diagnosis of MND.

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


              Originally posted by Shepster34 View Post

              Please accept my sincerest apologies if i offended anyone in this thread. I certainly didnt mean to offend with anything i wrote. This forum is a great resource and outlet for me so i am so sorry.
              I think you really should try to find a more appropriate outlet as clinicians have told you that you do not have MND - and it's nearly 4 years now since you first had what you thought were symptoms.

              As I pointed out previously, please bear in mind that some of the people responding on this forum may be using assistive technology to type. It is a lot of effort for them.


                Shepster34 - please read Health Anxiety on and ask your GP to refer you for therapy.

                Diagnosed April 2017


                  Shepster34. Not offended in the slightest and I have at most perhaps 2 years to live. X


                    Shepster34 I wish you well. Keep in touch.
                    Anyone that wants to private message me please do. I have a listening ear, never criticise well meaning people and have lots of empathy x even though I have progressive bulbar palsy and life is hard right now. Although I cannot speak I will always reply. I'm all about helping others during the limited time I have here.
                    Last edited by Hairbsb; 20 June 2022, 09:16.


                      Please do not dismiss people's symptoms as anxiety. Are they only allowed on this forum when one has a diagnosis. Shocking!!! No one has to reply if they don't want to. I've noticed that said people have no difficulty in posting uncaring messages. What an uncaring forum.


                        Shepster34 for your own well being please do not post on this forum. Such an uncaring forum. Please pm me instead. Me and several others cannot be wrong. This forum. Will either ignore you or post very rude messages. All this about Being sensitive rubbish. I will always support the people who are being bullied. I am terminally ill and would never knowingly treat another human being that way. Mnd moderators what do you have to say about that


                          Originally posted by Hairbsb View Post
                          What an uncaring forum.
                          Actually, the opposite is true.

                          People on this forum are full of kindness and consideration - this includes knowing when not to enable some people to further their insecurities, the ordinary non-psychologists amongst us are ill equipped to support some people in need, and I for one, feel a duty of care towards the mental health of members and this forum is not the right place for some people.

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


                          • Hi Paul,

                            You are very welcome here on this forum.

                            Please don't let certain individuals discourage you. Even those of us with MND are treated with disdain from time to time, even by the MNDA!

                            Any neuro-degenerative condition is an absolute nightmare and the state of medical science is years away from effective treatment.

                            Effectively we are all in the same boat!!


                              Bitter much? I get it and have those moments too but all on the same boat here as Graham stated and try to keep them in check as a grown up. Bickering seems petty with what each of us are dealing with. Ellie and others are greatly appreciated for their honesty and contributions to this forum and I believe the grinding of axes is taking away from the real purpose here. All are welcome and spoken to candidly with real life experience.

                              Just the point of view from one that is in the same position as all here and likely, who actually knows, has less time for nonsense than you.

                              Start your own blog or something if you don't like the way this forum is conducted. Don't always have to agree with everyone, but lashing out seems a little overboard. Especially to someone who has, with great challenges you haven't come close to experiencing yet, contributed so much to others unselfishly.

                              I have personally learned a lot from those that contribute actual facts from experience and miss those that have lost the fight but gave their all along the way to boost others.

                              Qualified Dr's are the only true path to answers. empathy always welcome but must be genuine and fact based imo.

                              Don't post much but will step in when something seems sideways.

                              My best to all


                                Hello, I would like to add my own comment to this and won't reply again. Anyone that posts on this forum should be dealt with empathy and respect some are is such despair they don't know what to do and aren't perhaps thinking straight, I know myself I posted on this forum in a state of utter despair and was treated in a very bad way told to see a psychiatrist and other comments, when you have seen the medical profession and have been given different viewpoints from them, different emgs in the end you just need someone to talk too, I understand this isn't an anxiety forum, and there is alot of good information for the diagnosed no one posts on here for no reason. I don't think people are bickering just different views.