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    Scared

    Hello everyone, I’m currently 25 years old& I’ve been here before in 2019 I was scared thinking, I had MND I panicked myself really bad and I saw a neurologist in January 2020 he ruled MND out on physical exam but since just before Halloween this year I felt like I was slurring my words and swallowing issues but I don’t know whether it’s because I’m focusing on my swallowing, my partner, friends and work colleagues have said I am not slurring my words, I suffer really bad with health anxiety and my current fear is bulbar MND I have spoken to MND connect a lot and they tell me it’s not MND, I have muscle fasciculations and I have had them since 2019 I had tongue twitches then but they calmed down but recently I’ve been getting tongue twitches but it’s a quick sudden pop and goes it can happen between 1 to 10 times a day, I am scared because I’m 25 years old and I have 2 young children and I’m scared I won’t be here to see them grow up, I must also add I was referred back to my neurologist on November 4th 2021 and he rejected my appointment as he said it’s not MND I’m scared, any advice or information is greatly appreciated

    #2
    Try seeing a therapist, it should help your anxiety.

    Comment


      #3
      Originally posted by JFarrell96 View Post
      I have spoken to MND connect a lot and they tell me it’s not MND,...

      I was referred back to my neurologist on November 4th 2021 and he rejected my appointment as he said it’s not MND I’m scared, any advice or information is greatly appreciated
      Jordan, please take a step back and think about where you're at: you have been repeatedly told that you do not have an MND, but you're here asking us, who are severely disabled, using ventilators to breathe, cannot speak, cannot use our fingers to type and are dying, what you should do.

      If you have even a modicum of compassion, you would realise just how inappropriate your latest post is.

      Get help for your self-declared health anxiety.
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        So say we all 😁😊👀👏xx
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

        Comment


          #5
          I’m sorry if I offended anyone, I have no intention on offending anyone I was airing out my fears to see if I can get some advice because i know how welcoming and loving everyone on here is, I have my first councillor appointment tomorrow on zoom. As I said again I am really sorry if I offended anyone it’s not what I am trying to do, I am just genuinely scared I’m sorry😢

          Comment


            #6
            Originally posted by JFarrell96 View Post
            I was airing out my fears to see if I can get some advice
            JFarrell96 You still don't get it, do you? I need to spell it out for you Jordan: you are being cruel to us at this stage.

            Work out your fears with your counsellor, not us.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              #7
              JFarrell96
              Forum Member
              JFarrell96
              Please be really open with your counsellor and as you build up a relationship he/she should be able to help you with strategies to cope with your anxiety thoughts.Anxiety can be overwhelming
              Enjoy your young family and be glad it’s not MND.Use the tools you have to hand, relaxation techniques( plenty on you tube).
              Take up a hobby, concentrate on doing something for others ie voluntary work.etc.It’s not good to keep thinking about yourself possibly at the detriment of not being fully available to your family.
              Good Luck and think you have to realise that this isn’t the forum you need.
              Mary

              Comment


                #8
                Originally posted by Ellie View Post
                Jordan, please take a step back and think about where you're at: you have been repeatedly told that you do not have an MND, but you're here asking us, who are severely disabled, using ventilators to breathe, cannot speak, cannot use our fingers to type and are dying, what you should do.

                If you have even a modicum of compassion, you would realise just how inappropriate your latest post is.

                Get help for your self-declared health anxiety.
                Well said Ellie 👏👏👏 x
                Janette x

                Comment


                  #9
                  I agree with the posts above. I do understand that health anxiety must be debilitating and a constant fear. But neurologists who have spent years within their specialist field have said to you that this is not mnd. Didn't the relief put your mind at rest? Weren't you overjoyed that you do not have mnd? Why would you need to question their diagnosis when the medical professionals have said it isn't mnd? I think some therapy to discuss not only your fears but more importantly work on the why u can't believe what you have been told. Try and understand why this obsession is taking over your thoughts and life? Surely then you can put these thoughts behind you and start living without going over and over everything again and again 2 years down the line. Am sure your intentions weren't too hurt people here but as Ellie said it does and will continue to each time. Be honest and open with the counselling to get the best out of it.

                  Comment


                    #10
                    To be fair I have had hours of counselling and I still can't see the point. Change comes from inside us. If you don't want to change you won't. If you do you will. Simples. 👀😜😁🤗xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                    Comment


                      #11
                      I know JFarrell96. I was afraid too when I was younger. Life is unfair but then you have to question what fairness is?
                      Copyright Graham

                      Comment


                        #12
                        Who ever thinks life is fair? 🤔😁🤗😘xx
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                        Comment


                          #13
                          I have real sympathy for the people who say they are ‘scared’, ‘frightened’, ‘terrified’ and all the other similar words we see. But it scares me (for their sakes) and unsettles me a lot - maybe because I worry that I have never felt that bad.

                          This really isn’t intended to be a crass or insensitive thought, but I wonder if there is a forum for people with health anxieties that we could suggest they take a look at.

                          Jordan, please believe the people who stick their necks out and tell you that you’ve not got MND. Please also work hard with your counsellor. S/he may be able to relieve your anxiety if you make it possible. Good luck!
                          PeterPan
                          Forum Member
                          Last edited by PeterPan; 2 December 2021, 21:19.
                          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                          Comment


                            #14
                            I looked Peter and found one briefly looking but don't know how to post it so will give it a go!

                            tried to Copy and paste and it isnt happening! I literally googled health anxiety forums uk! i find it worrying when a specialist tells someone they thankfully don't have a certain disease and yet a patient is adamant they know they have and will pay to source second opinions and get same result. X

                            Comment


                              #15
                              This is what my neurologist said on the letter sent out I only received it recently, I’m sorry for upsetting anyone I’m just so scared and I keep getting worried, my last question I’m going to ask is if I saw my neurologist in 2020 and he said I haven’t got MND I’m sure the chances of me getting it after seeing a neurologist who ruled it out would it be rare for it to happen nearly 2 years on, as I said I’m scared because I’m 25 And have a young family to look after

                              any advice is appreciated

                              love jordanForm

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