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    • #19904

        Have you been keeping up with the research and clinical trials in the field? When you go for your doctor appointments do they offer you information or help you access trials and experimental treatments?

      • #19913
        Don Povey

          I find the doctors and consultants very unhelpful and evasive at times regarding information of any sort to do with MND. I have had numerous tests as we all have, with very little in the way of information, I’ve had to pry, prod and generally do my own research to move forward.
          They either are not confident in their job or are withholding information I feel, very very frustrating.
          If there really is no information then why not be upfront and say so!. When you come away from a consultation and feel that you’re no further forward or have nothing to work on it’s frustrating in the extreme.

        • #19914

            I get good info from my doctors but I do research and initiate discussion. Like so many, I do not qualify for trials due to length of time since symptoms. I am always asked and ask myself about latest breaking drug news. I am linked to several news feeds so I read most everything. When I was first looking for diagnosis I got very so so info. These were local neurosurgeon and neurologist not ALS/MND  specialists. My disease was too early for them.

          • #19919

              My doctors are up front with info, but I let them know that I have done many hours of research myself.

            • #19927
              Marianne Opilla

                My team likes to suggest research opportunites. I have participated and am currently enrollled in open lable platform.  As far as everyday life I am pretty much on my own to read and ask and figure it out.

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