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    The uncertainty

    Hello, my husband developed weakness in his right arm last December, we didn’t think much of it at the time but eventually went to GP in April who told him to try to get fitter. This put him off going back until October. He was then sent to a neurologist and has had an MRI and EMG, follow up with neurologist is Wednesday this coming week. He has fasciculations, atrophy in shoulder and arm, he can’t raise his arm more than 45 degrees. His is now experiencing weakness in left arm. He also complains of feeling “stumbly” on his feet. He says his limbs feel stiff too. Are these typical symptoms of MND or do you think we have hope? I know you can’t diagnose but anxiety is through the roof and was hoping for some advice. Thank you
    Carer for my husband who was diagnosed with ALS on 15.12.21.
    Trying to think of only today and tomorrow
    Alison ♥

    #2
    Hi, sorry for the worry about your husbands symptoms but as you say none of us can diagnose. Some things that you mentioned do happen with people who have MND. But they may also happen to people with other conditions. So please wait for him to see a neurologist. Take care, Lynne x
    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


      #3
      Hi Doggymama

      MND Connect won't be online until Monday, so you won't get a reply from them before that.

      Originally posted by Doggymama View Post
      ...He was then sent to a neurologist and has had an MRI and EMG...
      What has the Neurologist said what's on or off the table regarding a diagnosis, or what feedback has he had so far? xx
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        I just wanted to say am thinking of u both. I know how worrying the waiting is and how naturally anxiety takes over. And of course reading up on the Internet you say to yourself yeah tick that box got that etc. But I remember my neurologist telling me that there are several disorders that can mimic others and have many of the same symptoms and signs. Its a lengthy process and they have to rule out all other illnesses first. The tests your husband is having will all aid to the process of getting to what's wrong and step by step. Wednesday is not far away and hopefully then you might have some more information. Be kind to yourselves in the meantime and remember he hasn't been diagnosed with anything at the moment and there are many possibilities. I am not very good with words but wanted to say hang on in there and know that you have support. Take care.

        Comment


          #5
          Thank you for your replies. The neurologist said it was something to do with his motor nerves and sent him for MRI and EMG which he has now had.
          Carer for my husband who was diagnosed with ALS on 15.12.21.
          Trying to think of only today and tomorrow
          Alison ♥

          Comment


            #6
            Doggymama If my reading of the situation is correct, I think you’re going to have to address your questions and concerns to the neurologist at the next appointment when those test results are discussed.

            One other thought… I’ve found that consultants’ secretaries are great people to build relationships with. They can sometimes wangle earlier or ‘overbooked’ appointments and generally provide support (if approached in the right way).
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

            Comment


              #7
              Doggymama
              Really hope Wednesday brings you both the answers you need.Best wishes
              Mary

              Comment


                #8
                Try for an ENT appointment
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                Comment


                  #9
                  Thank you for taking the time to reply.
                  Carer for my husband who was diagnosed with ALS on 15.12.21.
                  Trying to think of only today and tomorrow
                  Alison ♥

                  Comment


                    #10
                    Originally posted by Doggymama View Post
                    Are these typical symptoms of MND or do you think we have hope?
                    There is always Hope!

                    Has your husband any issues with his dexterity/fine motor skills?

                    I know it seems like an eternity until Wednesday but it will come around and hopefully you'll get answers. It's a good idea to take notes during the appointment, ask for clear explanations for anything which you don't quite understand and leave with a clear understanding of next steps. xx
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                    Comment


                      #11
                      Thanks Ellie, he has trouble cutting meat up etc. He is also now experiencing difficulty writing. He has started having awful headaches in the morning. He’s been retired two years. Seems to have deteriorated quickly. Really appreciate the advice and support.
                      Carer for my husband who was diagnosed with ALS on 15.12.21.
                      Trying to think of only today and tomorrow
                      Alison ♥

                      Comment


                        #12
                        Hi Doggymama

                        I'm sorry to hear about the symptoms that your husband is having and the concern this must be causing. As Ellie says, Wednesday must seem like an eternity away.

                        Ellie's suggestions on taking notes and asking questions is a really good idea. Appointments can be overwhelming and sometimes lots of information can be given to you and it's all a bit of a blur afterwards. Take your time with the neurologist and ask them to go over anything that you are concerned about or don't understand. It can be helpful to make a list of questions before the appointment and go over the list with the neurologist.

                        Do your husband's headaches improve as the day goes on? If he's sleeping flat, it might be worth getting him to sleep propped up a little bit just so that he's not completely flat when sleeping, until the appointment. Make sure you tell the neurologist about the morning headaches. It may also be a good idea to write down any symptoms that your husband is having and taking that with you. It can be so easy to forget things once you're in the appointment.

                        There is always hope. There are various things that could be causing your husband's symptoms. Please do know that we are here to support you. Please do feel free to give us a call on 0808 802 6262 Monday-Friday.

                        Best Wishes

                        Rachel
                        MND Connect Adviser
                        MND Connect
                        Contact us on 0808 802 6262 or at [email protected]

                        Comment


                          #13
                          Hello Rachel, Thank you for your reply. The headaches do usually improve as the day goes on, it just seems to be every morning he wakes with one. Thank you for your support.
                          Carer for my husband who was diagnosed with ALS on 15.12.21.
                          Trying to think of only today and tomorrow
                          Alison ♥

                          Comment


                            #14
                            Hello Doggymama

                            Definitely mention the headaches at the appointment. Sometimes morning headaches can be a sign that someone's carbon dioxide levels are a bit too high over night so it's important to tell the neurologist.

                            Best Wishes

                            Rachel
                            MND Connect Adviser
                            MND Connect
                            Contact us on 0808 802 6262 or at [email protected]

                            Comment


                              #15
                              He has seen the neurologist and they have confirmed als mnd.
                              Carer for my husband who was diagnosed with ALS on 15.12.21.
                              Trying to think of only today and tomorrow
                              Alison ♥

                              Comment

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