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    Possible diagnosis

    I say "possible diagnosis" but the Kings neuro lot are sure enough to get my GP to put me on Riluzole.

    I've been through the what I believe is the usual diagnosis hell as it only is my dominant hand and arm involved just now. It took over six months to dispense with carpel tunnel issues from that starting point with my GP and from when I lost the "pinch" movement in my thumb and forefinger.

    I've been hunting for a diagnosis for about 2 years to date now.

    Apparently I have some cognition loss but no one around me seems to think I've lost my marbles :-)

    Seems this "syndrome" has lots of body starting points and a wide range of genetic starting points - some Mendelian heritable (not me here) , some weirdly partly expressed - bit like cat coat colour really

    Anyone else started with this type of diability / malfunction?

    And anyone on Riluzole and wants to share?

    Best to all

    Andy
    Warmly


    Andy

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

    "Things turn out the best for people who make the best of the way things turn out"

    #2
    Hi Andy,
    Welcome to the Forum where you will get lots of good advice. My weakness started very similarly to yours but it wasn't my dominant side which was lucky for me. My left leg is weak now and I can't walk far. Hopefully you will have lots of support put quickly into place.

    Like lots of people I'm on Riluzole. I'm just starting my 3rd month of it and I've had blood tests every month because it can cause liver damage. To date, everything seems to be fine with it and it hasn't given me any side effects.

    Mine is sporadic MND/ALS.

    Not sure this is any help because as you've realised, everyone seems to follow a different path!

    Take care,
    Bern

    Comment


      #3
      Hi Andy and welcome to the forum;

      How have things progressed and what other symptoms do you have?

      I don't think that the pinch action is the first to go with most people with Mnd, generally it's failing to be open fingers and movement restrictions in fingers and hands.

      What tests have you had?

      I don't think that by what you wrote that it's time to start taking Riluzole!

      Best wishes, 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


        #4
        Hi,
        I had a similar start to MND, the doctor first diagnosed tendonitus in my dominant hand, then carpel tunnel syndrome. The hospital operated on my thumb, thinking it was a pulley problem (I climbed at the time and had several hand injuries). Fortunately the orthopedic consultant was not convinced and sent me for nerve conduction tests.
        Chris

        Comment


          #5
          Originally posted by Bern View Post
          My weakness started very similarly to yours but it wasn't my dominant side which was lucky for me. My left leg is weak now and I can't walk far. Hopefully you will have lots of support put quickly into place.
          Thanks - sorry to hear about leg weaknesses - not gotten that far yet

          Originally posted by Bern View Post
          Like lots of people I'm on Riluzole. I'm just starting my 3rd month of it and I've had blood tests every month because it can cause liver damage. To date, everything seems to be fine with it and it hasn't given me any side effects.
          Again thanks - seeing my GP next week to get started, blood test and all
          Warmly


          Andy

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

          "Things turn out the best for people who make the best of the way things turn out"

          Comment


            #6
            Originally posted by Terry View Post
            welcome to the forum
            Thanks

            Originally posted by Terry View Post
            How have things progressed and what other symptoms do you have?
            * thumb and forefinger pinch does not work properly
            * muscles that control all fingers to extend not working
            * muscles that pull in finger grip as strong as ever
            * some muscles in forearm and upper arm wasted

            So I cannot e.g. do up shirt buttons with my affected hand and I drop things - but I can grip my bicycle handlebars - the one with flat bars - and ride perhaps 100 miles per week - and use the brakes having adjusted the brake lever position

            Originally posted by Terry View Post
            What tests have you had?
            * head and neck MRI
            * scan for carpel tunnel
            * spinal tap to check infection / inflamation with blood tests
            * electrical nerve conduction tests

            Originally posted by Terry View Post
            I don't think that by what you wrote that it's time to start taking Riluzole!
            Perhaps I was understating what is going on?

            Best

            Andy
            Warmly


            Andy

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

            "Things turn out the best for people who make the best of the way things turn out"

            Comment


              #7
              Originally posted by Chrisp View Post
              I had a similar start to MND, the doctor first diagnosed tendonitus in my dominant hand, then carpel tunnel syndrome. The hospital operated on my thumb, thinking it was a pulley problem (I climbed at the time and had several hand injuries). Fortunately the orthopedic consultant was not convinced and sent me for nerve conduction tests.Chris
              Ah - thanks - similar path to me except I'm a cyclist and major computer user

              Best

              Andy
              Warmly


              Andy

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

              "Things turn out the best for people who make the best of the way things turn out"

              Comment


                #8
                Hi Andy;

                * muscles that control all fingers to extend not working
                * muscles that pull in finger grip as strong as ever
                * some muscles in forearm and upper arm wasted

                Those symptoms are not so good as I have them.

                It sound like you might have had some or most of the tests, it depends on what they where looking for in them but they might be able to look back at them. I just hope it's something else and you get an quick answer.

                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


                  #9
                  Originally posted by Terry View Post
                  It sound like you might have had some or most of the tests
                  Thanks again - forgot to say I've had a bod doing reflexes with the traditonal rubber hammer - seems to show the damage to the relevant motor nerves go all the way to motor region of the cerebral cortex - apparently this is an MDN indicator and nerves are not trapped somewhere e.g. in my wrist or neck,

                  Hence the original comments about loosing marbles - apparently cerebral cortex damage to motor neurons sometimes associated with other damage there

                  Best

                  Andy
                  Last edited by nunhead_man; 1 August 2017, 11:53. Reason: spelling!
                  Warmly


                  Andy

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

                  "Things turn out the best for people who make the best of the way things turn out"

                  Comment


                    #10
                    Hi Andy. I started in a similar way to you. My "pinch grip" became weak and I visited the GP. She was unable to identify the cause. After some time my arms started to become weak and I lost body mass around my shoulders. Revisited the GP, a different one this time, and he looked at the webbing that connects the area between the thumb and index finger which had atrophied. Combined with the arm weakness he refered me to a neurologist. Tests confirmed ALS. By this time the muscles in my neck had pretty much packed up. That was a little over two years ago. I have been on Riluzole since then with no adverse effects. I wear a neck support collar, the Sheffield Support Collar often refered to as the Sheffield Snood and would struggle without it. My walking is becoming more awkward, with frequent stops required to take a rest.
                    As others have said, there are many different ways we start the journey with the disease. I wish you all the best.

                    Comment


                      #11
                      Hi Andy,

                      Welcome to our motley crew.

                      A few questions if I may...

                      Was it the Neuro in King's who said you've "Possible ALS/MND"? I ask because there is a diagnosis of Possible ALS/MND, which is damage in one area - Probable ALS/MND is damage in two areas and Definite ALS/MND is damage in three areas.

                      Did you have an EMG? I know you had NCS.

                      Did you see a Neuropsychologist and do the assessment and, it was on that basis you were determined as having cognitive involvement? Or who, why and how? Cognitive involvement can be very subtle initially/always and not always obvious, hence the assessments.

                      I've been on Riluzole for 10+ years and, thankfully, liver enzymes always ok.

                      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


                        #12
                        Originally posted by philipb View Post
                        Hi Andy. I started in a similar way to you. My "pinch grip" became weak and I visited the GP. ........................... I wish you all the best.
                        Thank you for sharing - and best wishes to you
                        Warmly


                        Andy

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

                        "Things turn out the best for people who make the best of the way things turn out"

                        Comment


                          #13
                          Originally posted by Ellie View Post
                          Welcome to our motley crew..
                          thank you

                          Originally posted by Ellie View Post
                          Was it the Neuro in King's who said you've "Possible ALS/MND"? I ask because there is a diagnosis of Possible ALS/MND, which is damage in one area - Probable ALS/MND is damage in two areas and Definite ALS/MND is damage in three areas.
                          OIC - 'twas "possible" as it is damage in one area

                          Originally posted by Ellie View Post
                          Did you have an EMG? I know you had NCS.
                          err - acronyms rule KO?

                          Originally posted by Ellie View Post
                          Did you see a Neuropsychologist and do the assessment and, it was on that basis you were determined as having cognitive involvement?
                          Yes - it was at my consultant's suggestion in that a cerebral deficit helps the diagnosis and I've been trying every window for an understanding


                          Originally posted by Ellie View Post
                          I've been on Riluzole for 10+ years and, thankfully, liver enzymes always ok.
                          Good news and hope mine is as good

                          Best

                          Andy
                          Warmly


                          Andy

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

                          "Things turn out the best for people who make the best of the way things turn out"

                          Comment


                            #14
                            Hi,
                            As well as climbing I was a kayaker, skier and cyclist. I still cycle as it helps my dominant leg which is now deteriorating (foot drop etc).

                            Comment


                              #15
                              Hi Andy,

                              An EMG is generally known as just that, an EMG (as are ECGs e.g.) It stands for Electromyography, but Neurologists call it an EMG. An EMG assesses muscle health and motor neurons. You'd know if you'd had an EMG as it involves sticking needles into your muscles!

                              NCS stands for Nerve Conduction Studies, you said you had this test done. Quite often both tests are carried out in the same appointment.

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

                              Comment

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