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    New member with MND symptoms

    Hi everyone.

    Firstly I've been reading a lot of the threads on here and just want to say its a great community and provides a lot of well needed feedback for a lot of people.

    For back ground I am a healthy 36 year old man, with a clear medical background other than a history of experiencing aura migraines on a monthly basis. I've been experiencing the below symptoms now for the last 9 months and was initially diagnosed with carpol tunnel syndrome back in August last year:

    - stiff hands / joints / fingers
    - numb / tingling sensation in hands
    - loss of dexterity in fingers doing simple tasks
    - deltoid muscles fatiguing quickly when doing routine tasks (cleaning windows etc.)

    The symptoms have been ever present since the diagnois and in the last 4-6 weeks have got progressively worse:

    - increased pain / stiffness in hands, especially wrist, ring finger and pinky
    - weakness in hand / arm strength and have become more clumsy (dropping phone etc.)
    - burning sensation in forearms (inner and outer) when doing activities with hands
    - dull aching pain in bicep and elbow
    - thick saliva and feeling I need to double swallow food

    I have been referred to my local neurology department for further examination as my GP does not believe this is aligned to the original diagnosis and more in line with something like MND.

    I would very much welcome the thoughts of others in this forum that have had similar issues and although I understand that we should always follow our doctors guidance, keen to know if these are aligned with anyone that has then went on to be confirmed as having something more serious?

    Thanks again and look forward to your responses.

    #2
    Hi Ryan, obviously I would hope you do not have MND, and I probably won't be alone in saying to you to please get professional help with your worries.
    MND affects us all in different ways, in my case it was just deltoids that deteriorated first, and almost a year later for the hands.
    I don't know of any doctors on here but plenty who have had the disease far longer and worse than me.
    Heres hoping you are worrying for something much less than MND.
    Diagnosed 2nd Jan 2020
    Both arms/shoulders affected, left worse than right.
    Progressive Muscular Atrophy suspected

    Comment


      #3
      Hello Ryan. These are anxious times for you as you contemplate what might be. At this stage your issues could be one of many problems not necessarily MND. Easy for me to say but you really need to hang on until you see a neurologist.

      Take Care

      Comment


        #4
        Hello Ryan, for me it was voice first. Hopefully you're in the clear. 👍
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          ryan1984 When is your neurology appointment?

          Hopefully you'll get reassurance at the appointment that it's not an MND - the symptoms don't align with it, but the specialist will give their opinion.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            Hi Ryan. What you described about your hand and arm could match my RSI (repetitive strain injury) nerve damage, and carpal tunnel syndrome in my right arm. I’ve had this for about 25 years. This was 20 years before MND symptoms started. But your description about your swallowing I cannot really comment on except that there may be another explanation, other than MND. I certainly hope so. But MND is dreadfully hard for specialists to diagnosis. Good luck, and don’t over think this until at least you’ve seen a neurologist. Taking 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


              #7
              Hi all, thanks for the messages it really is comforting. My appointment isn't till mid June so I feel like it might be a long 6 weeks!

              Comment


                #8
                Hi Ryan. As others have said, you better to see neurologist before assuming anything. As you say it will seem agonising wait. Good luck matey

                Comment


                  #9
                  Hello Ryan

                  Hope that this isn't the case. Take care, and plus 1 to seeing a neurologist, as everyone has said...
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

                  Comment


                    #10
                    Dear Ryan,

                    As you will have seen from the comments from the forum members, it is very difficult to say that your symptoms could be those of Motor Neurone Disease (MND) because there are other conditions which can display the same symptoms.
                    MND is a very individual condition and onset can be very different from one person to the next.
                    Not all of those symptoms you have described are typical of MND, but it will be up to the Neurologist to examine you and look at how your symptoms are affecting you. He may also refer you for some tests before he is able to be certain what is causing your symptoms.
                    June is a long time to wait for an appointment when you are so anxious, so I would suggest you call the Neurology appointment clinic to ask for any cancellation appointments that may come up. Very often this means you will be seen sooner than your planned appointment.
                    In the meantime, if you would like to talk to someone about your symptoms, please do call the helpline team, MND Connect on 0808 802 6262, we are always available to talk to you about your concerns.
                    Kindest regards
                    Jacqui
                    Senior MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #11
                      Hi Ryan, I got very anxious waiting for my neurology appointment and then covid restrictions postponed my appointment.In the end I paid for initial consultation to the same consultant I was waiting to see on NHS.I also paid for my nerve conduction test as just wanted to know what was the diagnosis.I realise not everyone can pay but just mentioning it as an option to waiting so long.
                      Hope you get a good outcome
                      Best wishes
                      Mary

                      Comment


                        #12
                        Hello all, many thanks to those that have replied, it is greatly appreciated.
                        ​​​​​​i have started noticing fascinations/twitching. It started on my right leg above my knee and has since subsided, however both my calves / Achilles regions are now twitching. Is this aligned to MND also?

                        Contacted the NHS and waiting for cancellation appointment.

                        Will look for private appointment also.

                        ​​​​​​Thanks

                        Comment


                          #13
                          ryan1984 People twitch all the time, the overwhelming majority of which are for benign reasons, including stress.

                          A diagnosis of ALS is dependent on several criteria, of which twitching is one, but means nothing in the absence of other ALS-suggestive symptoms (as determined by a Neurologist)

                          Please don't drive yourself mad by focussing your energy thinking you have ALS - anxiety only makes things worse.
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          Comment


                            #14
                            Ryan, i have no idea how the specialists identify MND, as opposed to other nerve related diseases. I had to show my reduced finger strength to a muscular something department, then was referred for nerve conduction tests. It was pretty quick after this that i was referred to Neurology. I suspected nerve damage from the onset, but never considered the potential for MND. The neurologist knew it was nerve related, thought it could be a nerve infection, but decided to do blood tests, including a genetic test..
                            .
                            I think the only reason they got to my diagnosis so quickly was because they found one of the familial gene error that is associated with familial MND, and no other disease was considered by then.

                            So far, i have been very lucky, progressing slowly....... Long may that continue.
                            Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

                            Comment


                              #15
                              Originally posted by EvelynMW View Post
                              So far, i have been very lucky, progressing slowly....... Long may that continue.
                              Fortunately like you I am similar but I wish it was the same for everyone.

                              Richard

                              Richard

                              Comment

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