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Feb 1, 2008
I was wondering if there is any specialist doctor or researcher in ALS on this forum? I was thinking that it could be very useful, because every person that has ALS could share his own experience and thoughts on this disease and help scientific research on this. Considering that neither causes of ALS, neither efficient treatment are known yet by the science, from what I know, I believe that a efficient research on that can not only be done in a lab, and searching SOD and NOD and I don't know what enzymes, but also a more global view on this issue could help researchers. And I think that important experience can be shared to the biggest and best centers of research and specialists on this issue.
For example, it is clear that symptoms generally vary from person to person. A researcher could, after systematising hundreds of symptoms from hundreds of patients, he could have some conclusions on that. And the same with the causes and factors that provoque the disease. For example, if it is a virus, one could investigate the spreading and ways of transmission, before even discovering it in a lab. If it is a autoimmune disease, selfproduced by the humain body, even if I personnally doubt that humain body can selfdestroy itself in such a way, one specialist could study how is this declanched...etc.
I have not been diagnosed with anything, I only have very unpleasant symptoms that can seem like, but neurologists prefer to tell me that I am anxious rather than paying attention to what I am saying. One of them told me that it is impossible that I have ALS because that is a disease no one has under his 40's, wich is obvioulsy so wrong and ignorant, and also that you never feel anything in that disease, wich is also a stupid thing, as if one could be so phisycally distroyed and not feel anything...
So, no matter what I have, I think that a communication and share of experience between people that have ALS and the researchers on this disease could be very helpful to their research...From what I know the best research centers are in Canada and USA, so maybe some researchers could be also invited to this forum.
What do you think?
I think the "patients like me" web site for PALS probably has a good start at correlating the type of data you mentioned. It appears to me that that is their intention.
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