No announcement yet.

Looking for information

  • Filter
  • Time
  • Show
Clear All
new posts

    DeeH - I would also like to thank you for sharing your experience in such detail. It has given me a deeper understanding of symptoms/progression even though it doesn't exactly match what is happening with me personally.


      Originally posted by Zak2022 View Post

      If you don't mind answering, when your atrophy started was there any weakness involved? A lot of the MND information I have found states that atrophy happens only after weakness

      Regarding the therapies I have reduced the frequency of my chiro but am still visiting a Physio to see if this improves anything.

      Supplements I am not sure about as there is a much conflicting information about these are there are my symptoms. If there are any you can suggest I would be willing to look into them and discuss with my doctor
      Yes, the weakness seemed to come with the atrophy.
      There are supplements for which some evidence suggests some benefit to some people (in terms of function or delayed progression).
      You could look up turmeric, melatonin, creatine, l-serine and alpha lipoic acid.
      There is little profit to be made from them, so they are under-researched. Don't be surprised if your doctor is dismissive of all of them.


        Have you asked your consultant for a MND blood test Zak?

        Have you had a whole genome test that looks for all neurological conditions and potential gene spelling mistakes?
        Copyright Graham



          I didn't know there was a test that could diagnose MND.

          I have had a lot of blood tests over the past year and not all have been fully explained but genome testing has never been mentioned. Is this something you need to request or would it be part of standard GP blood testing.

          When I eventually get an appointment for a consultant I will ask the question also.

          Thanks for the info


            It is brand new. Do your research.
            Copyright Graham



              In all my research the only info I have found towards blood tests are CK test which only shows in up in a percentage of MND patients but can also be seen with many other conditions. Blood tests to rule out other conditions and then gene testing which only shows if you have some form of mutation. From my understanding gene testing doesn't guarantee you will be affected by the disease only you have the chance.

              There was a study showing blood testing patterns in people with MND supported by the MNDa in 2020 but I cannot find any current info on it.

              Would you happen to have links to web pages with info regarding this new test?


                If you are diagnosed w/MND in only 1 EMG then you are lucky.

                I ended up with my 8th EMG before they confirmed my diagnosis. They also did a brain MRI w/contrast, multiple (12 or more) blood tests, urine tests, and clinical exams every 3-6 months for 7 years before they quit poking and prodding me. Recently, studies show that neurofilaments can be detected in the bloodstream and may be a reliable biomarker for MND (results are still out though). Blood tests generally can be used to rule in or out other conditions.



                  I am really sorry to hear you had to go through such a lengthy diagnostic process but I do appreciate you taking the time to respond to my post.
                  I managed to find some information earlier today regarding neurofilaments but it seems there is still a lot of work going on with the testing. Nothing relating to testing on NHS websites other than CFS tests. I am however going to discuss with my GP at my next appointment to see if this is something we can look into.



                    It is not well-understood what causes MND. Genetics are known to be associated with 10% or so of cases. As understanding of genetics increases, more genetic triggers will probably be found and this percentage is likely to rise, although it might not be of much use per se, as currently there is not a lot that can be done to counter these genetic mutations.
                    However, when symptoms precede neurogenic depletion (e.g. when EMG tests do not detect denervation until long after MND symptoms begin), this suggests that the MND in those cases is likely to be a secondary complication of another pre-existing condition, and genetic sequencing tests might pick up that other condition which might be treatable in some way. If progression of the primary cause is halted or delayed, it might lead to a better MND prognosis.