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#Misdiagnosed, New MND patient from Birmingham(from Nepal/Gurkha)

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    #Misdiagnosed, New MND patient from Birmingham(from Nepal/Gurkha)

    Hi All
    I am 68M, retired banker from Nepal, has house in Birmingham. After nearly 20 months symptoms, wasted muscle on both legs, can't walk, diagnosed MND on December, 20 only. Wants to share my experience so noone misdiagnosed, lose their muscles so quick.
    Thank you
    Last edited by SATRUGHNA MANI LAMICHHANE; 18 February 2021, 08:44.

    #2
    Hello and welcome to the forum. Everyone tries to help each other in one way or another. Look forward to chatting with you.

    Comment


      #3
      Welcome to the place where people understand what you are feeling. 😁x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Hi it's lovely to meet you. I hope we can be of help.
        Denise xx

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          #5
          Hello Satrughna, I don't think misdiagnosis as you say would have saved your muscles - that's my own personal opinion, if your muscles were going then that's it no amount of excercise could have helped them, its not even as if you could have taken some medication early on because there is none.

          Sorry to be a party pooper on your first visit to this site, just saying it like is has been for us.

          Best wishes

          Sue
          Husband Albert diagnosed PMA Feb 21

          Comment


            #6
            Hello
            welcome to our group x I hope that we can help you with any questions you have

            stay safe
            Sarah

            Comment


              #7
              Welcome to the forum, to get a misdiagnosis, although upsetting, isn’t unusual with MND. The Neurologists start at the most likely diagnosis, and gradually exclude other possibilities.
              I hope we can help you.
              Take care
              Sue

              Comment


                #8
                Welcome from me and you will find support here.
                I’m going to do this even if it kills me!

                Comment


                  #9
                  A warm welcome to the forum from me. Its a good place for friendship and support.

                  I am sorry for your diagnosis and that you were misdiagnosed initially. Its frustrating but not uncommon as MND is tricky to diagnose. I think neurologists need to ensure they haven't missed anything else that could be treated.

                  Take care of yourself,
                  Love Debbie x

                  Comment


                    #10
                    Thank you all, feels am heavenly blessed having so many kind hearts around forum. Hope I can share my opinions regularly in the forum.
                    Actually, seems I need to clear about misdiagnosis on me through this forum so we may have more strength to aware others;
                    We stayed with our kids for 6 months in UK, flew back to Nepal via Heathrow last of Nov 2019. Mid 2019 I had bit difficult to walk long but I was ok for short walk. Just before returning to Nepal, I felt a fall once at our doorstep in Birmingham House but someone holded me. As soon as I returned Kathmandu, Nepal's Doctor did laser operation for my Vericose vein on a leg, actually it was MND(they even couldn't guess, no family history). Following vericose vein operation, and rest I lost all my leg muscles on both legs, toe on left leg dropped suddenly. COVID19 lockdown and my condition didn't let me go for treatment anywhere from Nepal, no EMG in Nepal. They suspected ALS on 8th October 2020 only, me and my family shocked, took it seriously. My elder son had COVID19 at the same time, he missed his flight on 13th Oct. Following his home isolation he rebooked his flight to last of Nov, gone AIIMS, Delhi(By road journey, no flight that time between Nepal and India because of Covid 19) on mid December 20, Dr Achal Srivastava diagnosed MND.
                    Around 20 months before diagnosis, gone to almost all possible consultants, hospitals and alternative medicines/conservative things in Nepal but no luck. My younger son, daughters, grand son, son in laws all did great job. My wife is doing great sacrifice 24/7.
                    I am stucked in Nepal by COVID19 crisis, seems can't come back to UK again. My voice is ok till date, feels bit difficult on breathing but still OK, started on hands recently. Have a personal physio Therapist, having voice therapy chanting Sanskrit, following dietician's.
                    it's a bit long story, lastly, if anyone need any help from Kathmandu, pls remember me. If you need any volunteer help in UK my elder son and daughter in law are happy to help you on their free time.
                    Thank you!

                    Comment


                      #11
                      It is we who are blessed by having you in our lives 😁x
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        Welcome to the forum from me also. It might be tough, but we try to make it easier for each other.
                        Each day is made easier with a bit of humour.

                        Comment


                          #13
                          Welcome Satrughna. Your journey so far sounds very similar. There is no definitive test for MND it’s arrived at by a process of eliminating everything else. I was fortunate (?) that my consultant told me immediately it was almost certainly MND but then followed nearly two years of tests. Electrical tests, MRI scans, muscle biopsy, lumbar puncture to name a few.

                          I wish you the best on this horrible journey we are on. You will have wonderful support here.

                          Richard
                          Richard

                          Comment


                            #14
                            Hi all
                            Thank you all for your kind words. Having such a loving, caring family and so many kind souls with same pain in the forum, edited my post, removed unlucky.
                            #Chia Seeds
                            Friends; I have seen health benefits on Chia Seeds, googled link is enclosed below. I am starting to have Chia Seeds from tomorrow morning(soak a tea spoonful chia seed previous evening and drink it tomorrow morning), if anyone is having it please share your experience.
                            https://www.healthline.com/nutrition...ds#bottom-line
                            Have a nice day!
                            Thank you

                            Comment


                              #15
                              Satrughna please let us know how you get on with them, that's a lovely gesture with the offer to help anyone,

                              best wishes

                              Sue
                              Husband Albert diagnosed PMA Feb 21

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