No announcement yet.

Awaiting diagnosis

  • Filter
  • Time
  • Show
Clear All
new posts

    I have done postal voting for years since when I was working I was often away on voting day. It is very useful if you are disabled however I now feel that there isn’t anyone worthy of my support.

    Sorry, political rant over.

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


      I am glad you found this forum so helpful. Awaiting diagnosis is so hard and seems to take so long. I really hope that your husband has something treatable - it sounds like MND isn't so likely which is great news. Good luck to you all.


        I haven't been on the forum for a while... this is really just an update, I had to undergo another MRI. and this has confirmed I have progessing frontotemporal lobe dementia. even though "some" are saying I have some MND signs, they are waiting to see more! I'm finding the whole process awful... I'm still having the electrode test, but as yet they are not showing changes..
        Thanks for the support I've had off Ellie,Terry etc, but will keep you informed..
        It's enough dealing with the dementia at moment quite low with it all.
        take care of each other


          Sorry about your news Chebs, 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.


            Hello Chebs,

            Sorry to hear about your diagnosis. Understandably, you have got a lot to come to terms with and so it's not surprising you feel low at the moment. Hopefully you have lots of support from family and friends.

            It's lovely to hear from you again. I remember the last time you posted on the forum, you mentioned that you have got a lovely new puppy called Indi. How is Indi? I expect that Indi is keeping you and your husband very busy - because puppies usually want lots of attention and regular walks!

            Hopefully, you Alan and Indi are able to get out and about a bit, so that you can enjoy the beautiful Suffolk countryside together. I expect Suffolk in the Spring and Summer-time is particularly beautiful and picturesque!

            Please keep in touch with us on the forum, as often as you would like to.

            Take care.

            Lots of love and hugs,
            Kayleigh xx
            Last edited by Kayleigh; 8 May 2019, 23:48.


              Hi Chebs,

              Thanks for keeping us updated.

              Love Terry
              TB once said that "The forum is still the best source for friendship and information."

              It will only remain so if new people post and keep us updated on things that work or don't work and tips.

              Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


                Keep us updated Chebs and look after yourself


                  Hi All,
                  Thanks for all the lovely comments, I will stay in touch.
                  talk soon xx


                    Hi Kayleigh,
                    Indi is now 10 months old and she's like a breath of fresh air... She goes dog training on Monday nights and she is coming on leaps and bounds.. Last weekend we went up to Wells-next-to-Sea (old childhood Memory) such a lovely time and indi loved running around the beach.. I took some sand from there for my memories.
                    As its only a couple of hours up the coast it's somewhere I can return to.
                    I'm having problems with my movement,stiffness,cramps..which then makes me tired.
                    I have a meeting with the consultants begining of June, so hopefully get some answers
                    love to you and yours
                    Chebs xxx


                      Hi All,
                      It’s been a while since I have been on the forum and I promised I would update with any news. After months of waiting my husband finally got a diagnosis of spinal cord stenosis at c3,c4 which was causing all the symptoms. He had spinal cord surgery on Monday and is recovering well on spinal trauma ward. Surgery was to prevent any further deterioration with little hope of improving current symptoms. When he is able he will be moved to specialised spinal cord injuries unit for some rehab. I’m so sorry that I came to this group when I really didn’t belong but I’m very grateful for the support I received on here when I was at a very low point in my life. Thank you all for all your kindness shown and I sincerely wish each and everyone of you the very best on this most difficult journey you are all facing.

                      Again thanks for your time
                      Kitty xx


                        Thanks for the update, I was wondering how you got on.
                        Best wishes for the future.


                          Hi Kitty,

                          I'm glad a cause was found for hubby's issues but sorry the damage caused isn't fully repairable.

                          It must be a huge relief that his surgery went well - operating so close to the spinal cord and all.

                          Hopefully his rehab period goes quickly and he's soon back home where he belongs!

                          Please don't feel bad about joining the Forum, you had legimate fears to do so. I'm glad you found support in your hour of need.

                          Thanks so much for giving us an update and I wish you both well for the future.

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