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Looking For Advice / Reassurance

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    Originally posted by Graham View Post
    It is important not to obsess about it and relax. Worry can cause conditions itself.
    Agree Graham.
    Diagnosed October 2020 - See my blog at


      Daz, you sound like me. I went to neuro after speaking to her and the only test i had was a mri of my thoracic and cervical spine. I was told fnd. No follow up


        Hi, just a quick update on my situation with a view to helping other people. I had an EMG on Tuesday with a neuro physiologist who said he has 15 years doing these tests. Although he said he would need to formulate a report to send to my neuro, in the 3 limbs he tested (2 arms and 1 leg) he was happy to tell me that he didn’t feel there was anything “sinister” going on. I see my neuro in a few weeks and hopefully he may have done more information base on the report as my symptoms continue although I must admit mentally I feel a lot better after having the EMG and seeing how valuable you guys say this test is in ruling out things. The anxious part in me does ask have I had the rest to early but I re read the statements on hear that say there is no such thing and that makes me feel better. Thank you


          Glad to hear all is ok , hopefully your other symptoms will resolve quickly if you're not anxious about things and what is ..

          I feel very similar to your situation, although I have muscle twitches as well as tremors ...

          May I ask was all this on private or NHS?


            Hi, apologies for the late reply. This was done privately. Also just to add I do continue with symptoms and in particular my right foot feels like it has very little padding and is causing me to limp now. Also my right thumb has reduced feeling and I still have perceived right sided weakness as well as the widespread twitches. I have now seen my neuro who did not show me my EMG / NCS report but said that all was fine and “within normal ranges” where his exact words. He actually thought my symptoms could be an after effect of contracting Covid in mid January. Hope this thread helps someone and thank you for all your messages and advice guys 👍🏻


              Hi guys, quick update on my situation. My symptoms I’ve mentioned above in this thread persist and the calf muscle on my right leg (dominant side) has reduced in size and is me noticeably smaller than the muscle in my non dominant left calf. I’m all hoBeaty I’m not sure what to think anymore! Some worries have returned but I try and reassure myself by thinking if there was an MND issue in my right leg a recent EMG done whilst the symptoms were on going woukd have picked this up. Back to my neurologist to discuss.

              one question… would you guys suggest I get a copy of the EMG / NCS report from my neurologist? thank you


                Apologies for spelling


                  Originally posted by Daz A View Post
                  ... would you guys suggest I get a copy of the EMG / NCS report from my neurologist?
                  By all means get a copy of the reports.

                  Although the technical results are hard to interpret, the summary/conclusion is usually straightforward.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user


                    Thank you for the advice and taking the time to reply Ellie.


                      Sorry to read what you have been going through Daz A

                      I took a private physiotherapy appointment for assessment after some wrist / hand visible muscle atrophy, when I felt I wasn't getting very far with my GP practice, this was nine months after I had some unusual symptoms (that at the time would reasonably not cause concern for ALS / MND, as I had existing long-term Crohn's Disease / autoimmune inflammatory issues, I'd ended up in A&E back then).

                      By taking a physiotherapy appointment, my muscularskeletal condition was assessed / recorded, together with strength, balance, coordination and reflex responses.
                      The Physiotherapist forwarded a report to my GP in 'medical language' and my next GP appointment was taken more seriously, together with additional medical exclusion tests to consider various conditions.
                      This documented physio assessment became a reference point for changes further along my diagnostic journey.

                      By using secondary medical practitioners who liaise with GPs, it may go some way to understand symptoms and changes and ensure things aren't put off in the wider medical system.

                      I think we as a community, have to be careful on a forum to strike a balance where we can't diagnose, but can offer shared experiences, but we also have to be empathetic.
                      Respectful of people with challenging medical and personal circumstances around such a serious health condition, but also respectful of the impact to anybody new to a challenging diagnostic journey and engage positively and supportively to anyone who makes a first enquiry on here.

                      We can only imagine what goes through each person's mind before their first sign on to this forum.

                      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)...


                        Arcadian and Daz A - I just want to second this advice. A private Physiotherapist was fundamental in supporting me and getting my symptoms taken seriously.
                        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!