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    Worried, need some advice.

    Hi All!

    I was referred by my GP to a Neurologist after a series of falls and a twitches in my hands and legs but my Neurologist is confident that all is fine.
    The problem I have is my Neurologist has been dismissive of my symptoms from first appointment and the only clinical exams done have been strength tests and reflex tests. My right arm and shoulder are very stiff and I struggle to pick up a glass from the press where I i use to warm up daily with 35kg weights. I've been a body builder for several years and know my body very well. My strength would be above normal and I know I'm not what I once was, I was told to have physio and soak in bath. I did all that but things have been just getting worse.
    Since my first appointment 6 months ago with the neurologist, things have gone down hill, besides been exhausted during the day, to the point I need an hours nap and struggle to get up, I have lost 25kg in muscle mass but to look at me you would not notice as I was so big before. My wife is concerned about the muscle loss too and I have also started to get really bad muscles cramps and muscle spasms all over my body. I'm dropping things a-lot and my fingers are not what the use to be with dexterity and now I have some pretty brisk reflexes when touched in certain muscle groups on arms and legs.
    I suppose besides been very worried that I'm going down hill and cant explain it, is it worth seeking out a second opinion to my existing Neurologist and I am i symptomatic or what would typically be early stages MND?

    Thank You and apologise if its just a rambling but I really do know what to do next.

    #2
    Have you a follow up appt with the original Neuro or an ongoing plan?
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Hi Ellie. He has asked me to come back in another 6 months time.

      Comment


        #4
        So, are you certain the Neuro offered no reason for your symptoms? (even ones you don't agree with)

        Either way, there is nothing to stop you getting a 2nd opinion - symptoms are often worse if you're stressing about them and it can turn into an unforgiving vicious circle which, in itself, is reason enough to get another opinion.

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

        Comment


          #5
          Hi, I second what Ellie wrote to you.

          You asked how MND starts off. Well, we are all on different MND journeys but some common things like weakness in one or 2 of your 4 limbs but saying that doesn’t exclude those symptoms being caused by something other than MND. Most of us have MRIs then one or more sessions of muscle and nerve condition testing before we get a definitive diagnosis. To have these a neurologist would have to request them, so a second opinion would be a possible route for you. Talk to your GP. He/She ought to know you better, could see changes in you so could offer advice and if they think that it’s appropriate request a second opinion for you. Good luck, Lynne
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

          Comment


            #6
            Hi Guys,

            Thanks for the great responses, really appreciate it. I should have also mentioned, I have had several MRI's all clear (Brain and Spine) and had an EEG also clear. I've also been asked to get a DatSCAN to rule out Parkinsons although Neurologist says its unlikely.

            Thanks Again.

            Comment


              #7
              Did you not have an EMG and NCS (nerve conduction study) too?
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                No EMG or NCS (wasn't even brought up), I did bring up the spasms on the muscles I was told was normal but it's really bad, it mainly on my legs and arms but spasms happen on stomach and even my face. It was typical that when I went to the Neurologist not one spasm, got into my car and thigh and arms go like crazy! At one stage I thought it might be coffee so stopped drinking it for 4 months and all the same. I'm back on the coffee now when I'm really tired during the day to get through work.

                Comment


                  #9
                  Hi All,

                  I thought I’d update this post, I hope everyone is doing great.

                  Well after an extremely difficult year for everyone with this pandemic I finally got a diagnosis after 2 Neurologists, nerve conduction studies, EMG’s, several other procedures, I actually had a DatScan too, as of Thursday I’ve been diagnosed with Progressive Muscular Atrophy or PMA as I’ve been told to call it. I was actually told this is a “better” one to have yesterday!

                  It went down hill after my last post and I just went on the hamster wheel of consultants and specialists. My hands have atrophy, arms and legs are weak but still very mobile.

                  I’m very upset and extremely pissed off and to be honest I most likely won’t be staying on this forum but just thought I’d pass this along but felt I should update this for some reason.

                  Sorry for the rant! My biggest worry at the moment is talking to my children.

                  D.

                  Comment


                    #10
                    D, thanks for the update. I’m sorry about your diagnosis but at least, as you said it’s not the worst. I hope that your talking to your children goes ok, and you have plenty of support. Take care, Lynne
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.

                    Comment


                      #11
                      Originally posted by bandersnatch View Post
                      Hi All,

                      I thought I’d update this post, I hope everyone is doing great.

                      Well after an extremely difficult year for everyone with this pandemic I finally got a diagnosis after 2 Neurologists, nerve conduction studies, EMG’s, several other procedures, I actually had a DatScan too, as of Thursday I’ve been diagnosed with Progressive Muscular Atrophy or PMA as I’ve been told to call it. I was actually told this is a “better” one to have yesterday!

                      It went down hill after my last post and I just went on the hamster wheel of consultants and specialists. My hands have atrophy, arms and legs are weak but still very mobile.

                      I’m very upset and extremely pissed off and to be honest I most likely won’t be staying on this forum but just thought I’d pass this along but felt I should update this for some reason.

                      Sorry for the rant! My biggest worry at the moment is talking to my children.

                      D.
                      Hi D, I have only recently joined this forum as I too was given a diagnosis of PMA, and this was after I was originally told I didn’t have MND. I completely understand where you are at, I’m waiting to speak to a psychologist in the hope of getting my head around it. If you can please stick with the forum, it’s a great place for advice and support.
                      Take care
                      Sue

                      Comment


                        #12
                        Originally posted by SueM View Post

                        Hi D, I have only recently joined this forum as I too was given a diagnosis of PMA, and this was after I was originally told I didn’t have MND. I completely understand where you are at, I’m waiting to speak to a psychologist in the hope of getting my head around it. If you can please stick with the forum, it’s a great place for advice and support.
                        Take care
                        Sue
                        Hi Sue,

                        we have a great PMA/PLS private group on Facebook so if you are interested in joining send me a private message and I will send you a link. We have a weekly chat and a monthly meeting on zoom. The sharing of tips and life stories keeps us upbeat.

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

                        Comment


                          #13
                          bandersnatch Sorry your diagnosis is PMA - yes, it is one of the "better" MNDs to have, it's still utterly devasting and life changing.

                          I second getting counselling - it helped me lots, especially in dealing with my children.

                          The Forum is here for you if ever you have questions, need to have a moan or a rant, you don't need to visit regularly.

                          Take good care and thanks for taking the time to update your thread, which can't have been easy.

                          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


                            #14
                            Hi I’m Doug, diagnosed with MND early November, can any one give me some advice, I have a severe stiff calf and lower leg muscles In my right leg, my left is wasted but I can still walk, thing is I now can’t walk 50 yards without the pain in the right leg getting me sit down, is there anything that can help I’ve tried everything

                            Comment


                              #15
                              Welcome to the Forum, Doug.

                              What have you tried already, just so people don't suggest things you know do not work.

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

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