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I’m so terrified

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    Peter, I’m sorry what you say makes sense.



      Ellie I hope you don’t mind I’ve sent a message to you.

      Thank you


        Can anyone advise me how to change title or begin a new thread thank you very much.


          Helen212 To start a new topic go to the following page and you should see what to do. Don’t think you can change a title 😀

          Diagnosed October 2020 - See my blog at


            Thank you Peter I will do that and be more thoughtful about what I write and title.

            Many thanks


              Helen212 Why don't you wait until after your Sheffield appointment to start a new thread? You may not even need this forum.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                Hi Helen212 I can change the thread title for you if you'd like. Let me know what you want it to be and I'll edit it.

                Best Wishes

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


                  Sorry Rachel,

                  I didn’t realise I could do that. I started another just called upcoming appointment. But thank you


                    Sadly worrying I’m still here going through the diagnostic process, getting worse by the day now it seems.

                    EMG’s can most certainly be done too early as confirmed by specialist.

                    Also if over 45 and suddenly struck with fasics that you’ve never experienced before, this should never be ignored.

                    My EMG only started showing signs in March.

                    ‘watch and wait’ such a horrible term but it was used very recently and I hate it.

                    Hope all doing as well as can be.

                    long, lonely journey


                    • Hi Helen,

                      Thanks for the update.

                      Yes, people know in their bones that there is something wrong but unfortunately with MND there is nothing that can be done.

                      At least I can terrorise my carer that dares to call me *princess*!



                        Thank you graham, or should I address one as ‘Princess’

                        as you know it’s relentless.

                        Thanks for taking time to reply, I always have read and learned from your posting as you know.

                        Don’t change my favourite poster

                        kindest Regards

                        Last edited by Helen212; 16 June 2022, 23:33.


                          Helen212 hello my lovely. It a very stressful time for you. I will always support you come what may. Xxx. I am now on riluzole and have a calmness that I never had before. Xxxx a


                            Thank you so much for your kind words.

                            I’ve previously read some of your posts which are always from the heart I’m so sorry you are going through this and glad you are feeling a calmness.

                            You sound like a very strong woman

                            much love


                              Helen212 i am strong but also have tolerance for others particularly those who have not been diagnosed. I have been there and got the tee shirt x


                                You don’t realise how lovely it is to hear that

                                ive really feared posting on here in the past

                                Thank you HairBSB xx