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    Hi, my names Donal, 31 from Dublin. I posted a few months ago, LMN disease was confirmed last week. Im just at a loss at the moment. Neurologists really havent a clue about this disease. I had told them 11 months ago that it was MND and they said it wasnt only for it to be exactly what i said. Im sure i will have questions once i get past this initial grieving

    #2
    Hi Donal. I know it's an utter sod, especially at your age.
    To be fair to the medical professionals, they are very reluctant to devastate someone's life by telling them they have this condition until they are absolutely sure.
    My diagnostic process took 6 months, and in that time they passed me from one specialist to another to eliminate and whittle down all other possibilities until this was the only thing left.
    By the time my Consultant Neurologist diagnosed me, my wife admitted that she had figured it out by googling my symptoms
    We are here for anything we can do for you buddy.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
    Still wondering what the future will bring.

    Comment


      #3
      Sorry to read this, as well as empathy regarding similar earlier indications along the diagnostic pathway before certainty...
      2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
      Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

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        #4
        So sorry that you have been diagnosed with this devastating disease.

        I was misdiagnosed in September 2021 by the neurosurgeon as suffering from anxiety and low mood despite later learning that an SLT nurse knew in July 2021that it was bulbar onset MND , but she was not allowed to tell me. Finally got the diagnosis in April 2022. It doesn’t affect the outcome but I would have done things very differently had I known. Mine is progressing so quickly I am so so disappointed at the lost time/ opportunities, so know how you are feeling.

        Comment


          #5
          So very sorry you’ve been diagnosed for this horrible disease too Danal, and at such a young age too. We’re always here for questions whenever you feel like asking x
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

          Comment


            #6
            Hi donal

            terrible news and I really feel for you but at least you have found us and we will do our best to support you.

            Love and hugs
            Denise xxx
            when i can think of something profound i will update this.

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              #7
              I remember your earlier thread.

              I am so sorry to hear this, you are in my thoughts.

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                #8
                sorry donal for the diagnosis

                Comment


                  #9
                  Oliveroldc just re-read your original post earlier in the year and feel it's really sad regarding the protracted and at times ambiguous diagnostic journey and uncertainties, even when interfacing directly with high profile clinicians and clinical testing.

                  Every now and then, research studies crop up that try and capture patient apects of the MND diagnostic journey. I'd encourage folk to engage with such studies, so that the impact and timescale can be recorded and hopefully the frustrations and uncertainties recorded and fed back regarding a drive to best practice and improvements.
                  Last edited by Arcadian; 24 September 2022, 14:11. Reason: spelling
                  2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                  Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                  Comment


                    #10
                    Oliveroldc Hi Donal. I dont want to get your hopes up or anything, but was wondering from your post, have you been diagnosed with mnd or diagnosed with lmn disease? there are some treatable conditions like CIDP and MMN which are lower motor neuron involved diseases? I hope locally you have the support you need.
                    Diagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.

                    Comment


                      #11
                      Welcome Donal. I hope you get the support and care you need and want. On here we all try to look after and support each other. It's a great team x
                      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

                      Comment


                        #12
                        Thank you all for your support, and to all of you going through the same, at least we have each other in this.

                        Zante all i have been told so far is that it is lmn disease. I am being told bulbar onset due to speech but tbh i am affected everywhere.

                        Arcadian, i am fairly annoyed at the host of professor neuros that i seen. I mean if all you do is see mnd all day long surely you would be able to tell. It only took me google and about 40 mins of research.
                        Not that diagnosis would have changed outcomes but i would have traveled quite a bit if i had known. I will still travel but it just leave me bitter. I mean my relationships suffered for 11 months because of doctors but its now left to me to mend everything in the time left.

                        I have one question that i couldnt get answered properly at the clinic. I have a lot of issues with tempature regulation. Being too hot all the time and sweating profusly for no reason. I could get a straight answer on this, is it part of the disease, have others experienced this?

                        Comment


                          #13
                          Oliveroldc I've had temperature regulation problems for a few years:-

                          Abdominal / gut spasms in the cold when outdoors when less active after a spell of exertion, together with muscle discomfort and stiffness, as well as overall discomfort in hot weather. 2020 and 2021 before understanding things were becoming a diagnostic journey, I had a few spells of unusual sweating (noticeable in bed / sleeping).

                          When I initially wasn't getting through to GP(s) that something wasn't right (I have some other health complications, but biomarkers weren't increased), I started to make a check-list of symptoms and the sweating did overlap with findings in some studies.

                          The recently postulated “disease spreading hypothesis” has gained much attention, especially for Parkinson’s disease (PD). The various non-motor symptoms (NMS) in neurodegenerative diseases would be much better explained by this ...


                          The disappointment is around not initially being taken seriously by a GP that things weren't right / step change from pre-existing (unrelated) health aspects - 11 months, as well as visible neuromuscular atrophy appearing in a second limb - 4 months before serious neurological disease was considered, then another 6 months of 'interim' diagnosis, before 'formal' (even though the EMG from 6 months before was used as the 'conclusive' supporting indicator).

                          On a personal level of frustration, my original work background involved fault diagnosis of complex control systems - methodical and timely logical interpretation of things being wrong and interpreting a 'fix' from known issues and interpreting new ones. Obviously I don't have extensive medical professional experience of neurological disorders, and some of my initial symptoms ambiguity could have overlapped with MMN or CIPD (particularly with having a long-term autoimmune inflammatory illness). In fairness to my GP, I made a credible suggestion of MND at the second limb atrophy, he then had me admitted to hospital that day to expedite a neck MRI that I had been waiting over 2 months for, for ruling out any undetected spinal injury.

                          Overall, the prolonged diagnostic journey and how it impacts around uncertainty for folk on an MND risk is unacceptable. Various reports suggest no improvement over the last 20 years on the timeframe.
                          If a 'cure' is to be found, I feel the only route in, is to catalogue symptoms much earlier and initial forms of treatment that 'slow' things, before irreversible cell damage becomes extensive.
                          Last edited by Arcadian; 25 September 2022, 08:54.
                          2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
                          Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...

                          Comment


                            #14
                            Originally posted by Oliveroldc View Post
                            LMN disease was confirmed last week.
                            Sorry to hear that Donal; was that diagnosis made by Hardiman?
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #15
                              Ellie, yes as a second opinion in the clinic

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