Legs weakness

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To add, some of my joints pain in arms and legs could also be from my severe osteoporosis (-3 to -3.9 Z-scores).

Also, do not want mods to feel being criticized much as I do appreciate their input. I feel we all here are living with MND or have someone close to us who has it. I find with myself that I can be over protective of my multiple conditions when I talk to other people about their symptoms. :)
 
Thank you for your detailed response and yes I get the point about needing a diagnosis to secure benefits, in the U.S. probably more so than in countries with lower healthcare costs and/ or a more social welfare system.
I also understand that it can be helpful to know which members are diagnosed with ALS to provide more targeted support.

What I unfortunately cannot agree on is seeing much progress in the treatment of MND/ ALS. For me this an incredibly disappointing chapter and I believe a quantum leap in medical science is needed before we see anything that can halt or stop the disease.

As for my diagnosis, a slow progressing MND is confirmed by an ALS specialist clinic. The neurologists wanted me for some further examination, including genetic testing, to further narrow down whether it is ALS or another, extremely rare sub-type, of MND.
I did not attend this appointment and I have no plans to do so either. I prefer to believe that it is indeed a rare sub-type, ideally so rare that I am the first known case and that it ultimately disappears as mysteriously as it struck me. I know chances are next to zero, but I prefer to see and handle it that way. Everyone is different...

Best to you all!

Thank you. I very much hope this for you too and that you can keep some hope alive. All the best.
 
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