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    #46
    I’m always polite

    Originally posted by Streetwise View Post
    No don’t thank me thank autism if you ever went to N Water's at four and we are all like that you always get the typical Aspie
    Aspie ! 😊

    N Water?

    Originally posted by Streetwise View Post
    Is the nagging pain are pulling sensation
    It if difficult to describe - it may be numbness

    But it may be fasciculation – I’ll get the SO (significant other – my wife) to look this evening
    Warmly


    Andy

    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

    Comment


      #47
      Originally posted by nunhead_man View Post
      But it may be fasciculation – I’ll get the SO (significant other – my wife) to look this evening
      No fasciculation in back spotted - and pins and needles in arm gone away after a combo massage / acupuncture session.

      So pins and needles may be trapped nerve in neck and shoulders and not MND - any views team?
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

      Comment


        #48
        Sorry stupid iPad corrects my words I've had it four months and it still doesn't recognise my accent.
        It should've said an autism forum

        Comment


          #49
          Originally posted by nunhead_man View Post
          Thanks Rick - and hope you do not think this rude but ....

          No - my best move was having a go at the bod who said I had carpal tunnel syndrome and pointed out I had no pain (at that time) and the disability was not caused by the nerves in the carpal tunnel.
          It wasn't rude at all mate, I'm not a chuckle thinking about you having a go a them.

          I was possibly mis-diagnosed with Polymyalgia but we read about it and MND can mimic Polymyalgia. But I got better, then relapsed and got better more than once. It's hard to tell but you would think carpal tunnel would be a mechanical thing so obvious.

          Comment


            #50
            Thanks Rick

            And had my six months check today so thanxs Kings

            Reported fasciculation, pins and needles etc and all concerned (Prof, his trainee registrar, my wife, me) that function loss was unchanged as is the diagnosis of Possible ALS with some muscles in my left arm weaker.

            We made nothing of my line about “However as I've said elsewhere sometimes e.g. my hand feels like a bunch of bananas and other times (like now) it feels really positive - for me actually AFTER exercise or use e.g. my handwriting improves as I concentrate”

            As njm said “Prof. Ellie is correct. It is probably fluctuating degrees of stiffness/spasticity. It suggests you have some Upper Motor Neurone involvement. The UMN dysfunction cases spasticity. Riluzole can ease spasticity. I could not have got through the last 4 years without Riluzole. I take it with no adverse side-effects."
            Warmly


            Andy

            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

            Comment


              #51
              Hi Andy,

              What type of exercise do you take. I have a program of exercises in the gym which were tailored to my ability. I definitely find it helps relieve spasticity.

              Barry
              I’m going to do this even if it kills me!

              Comment


                #52
                Originally posted by Barry52 View Post
                What type of exercise do you take. Barry
                Thanks re that - interesting

                I have physio exercises for my arm which I clearly do not do often enough if it helps spasticity

                I also ride my bike all over with me only able to use flat bars now due to the way my grip works - not sure how I'm going to do that when my grip weakens - was wondering about going back to a trike - I used to race with one like this...

                https://www.gumtree.com/p/bicycles/h...iff/1086888395
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

                Comment


                  #53
                  Andy:
                  I am reading your posts and a question arises in my mind:
                  Do you have a diagnosis of MND?
                  If uncertain I recommend you get a definitive diagniosis from a specialist neurologist. Such as the Motor Nerve Clinic at Kings College Hospital.
                  I am uncertain from your posts if you are in diagnostic 'no man's land' or not.

                  Best

                  Charles

                  Comment


                    #54
                    Originally posted by njm View Post
                    Do you have a diagnosis of MND?
                    Yes - it is "possible MND" on that diagnosis is possible/ probable / actual meaning 1 / 2 / 3 sites affected being hand/arm. drop foot or throat / mouth

                    And it is from Kings that I have that diagnosis - and from this bod -

                    https://kclpure.kcl.ac.uk/portal/jemeen.sreedharan.html
                    Warmly


                    Andy

                    ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

                    Comment


                      #55
                      OK. That sounds more like a definitive diagnosis.
                      In my view you should contact the Motor Nerve Clinic at Kings. They see me every 6 months and monitor my progression, give my regular SALT assessments, and answer all questions I have.

                      Regards

                      Charles

                      Comment


                        #56
                        Originally posted by njm View Post
                        In my view you should contact the Motor Nerve Clinic at Kings
                        That is who I see - Dr Jemeen Sreedharan does a session at that clinic I believe - Suite 5?

                        I've been every six months or so since 9/16 and have asking away

                        Originally posted by njm View Post
                        SALT assessments
                        what is SALT please?
                        Warmly


                        Andy

                        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

                        Comment


                          #57
                          OK. You are in the right hands.
                          SALT is Speech and language Therapist. They assess speech and swallowing.

                          Charles

                          Comment


                            #58
                            I thought I would update this thread as this is where I started here.

                            I still only have functional damage to my left hand, but my right hand is beginning to feel sketchy and I have fasiculation in all 4 limbs.

                            When I last went to see Kings in February 2019 they gave me what they called a baseline test of my lung function so they could check against it If I ever have trouble breathing.

                            I am still cycling with both my brake cables led to my right hand lever and have no idea how long I will be able to carry on doing that - in fact I rode 50 miles this week so I hope it might be a while.

                            As I may have mentioned, I was recommended the use of, a splint to wear on my left arm at night in case I might roll over and break it, although at the moment, strangely, I can support my bodyweight on that arm even though I cannot grip anything with it.

                            So I got a set of gloves that I could use to create a grip with my left hand thanks to this forum, but of course because I have been wearing this splint, my hand has got very stiff and I cannot bend my fingers enough at the moment to use the glove created grip.

                            So that is my update. Good card from a bad hand, someone has said.

                            Best to all

                            Andy
                            Last edited by nunhead_man; 4 March 2019, 09:01. Reason: dyslexia!
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

                            Comment


                              #59
                              Long may you stay like that Andy!

                              Can you massage the uncooperative fingers to ease the stiff muscles - it'd be a shame to lose some range of movement.

                              Merely out of interest, how is your release from "grip position". I remember a time when I was able to grip, but unable to release the grip - strange how motor neurons die in strategic batches!

                              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


                                #60
                                Good morning

                                Originally posted by Ellie View Post
                                Long may you stay like that Andy!
                                Thank you!

                                Originally posted by Ellie View Post
                                Can you massage the uncooperative fingers to ease the stiff muscles
                                Part of our breakfast routine is now a 10 minute massage as mandated by the Kings physiotherapist after Kings realised what had happened

                                Originally posted by Ellie View Post
                                Merely out of interest, how is your release from "grip position". I remember a time when I was able to grip, but unable to release the grip - strange how motor neurons die in strategic batches!Love Ellie.
                                My symptoms are different to yours - I have never had a problem with having a grip I cannot release.

                                My fingers all though stiff, are flaccid - in other words, I have some movement up and down and some strength when pushing in a direct line to my arm with my index finger, pushing against the joint. But I have no ability to move them very far, only perhaps a centimetre up and down from the vertical where my hand is held in line with my forearm.

                                Warmly

                                Andy
                                Warmly


                                Andy

                                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– 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"

                                Comment

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