Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Welcome to PLS-FRIENDS...this is probably where you belong! I was dx'd. with PLS Dec. 1997 at the Mayo Clinic after receiving a " Probable PLS " from Stanford University prior to going to Mayo Clinic in Rochester, MN. I had symptoms as early as 1994. I just turned 58 and live in Fremont, California (40 miles south of San Francisco) and I go to the UCSF ALS Research Center every 6 months. At my last EMG appointment, I showed minor abnormality in my lower motor neurons (left thumb) so " technically " I have ALS for purposes of " qualifying " for ALS research. My neurologist says minor LMN abnormalities are not unexpected in people who have PLS. Doctors often disagree in diagnosis. My husband's aunt (by marriage) was diagnosed with ALS well over 15 years ago and her symptoms are much milder than mine and I consider my symtpoms fairly mild. I don't use a cane or walker but I do hang onto my husband for balance when we're out. I insist that his aunt doesn't have ALS and she, of course, responds with her doctors say she does. We are in the process of fundraising for a Symposium. (Northwestern University Medical School-Primary Lateral Sclerosis Symposium) Two eminent neurologists have teamed up to plan a symposium in order for the neurological community to clinically define Primary Lateral Sclerosis. See <A HREF= " http://synapsepls.home.attbi.com/donor.html " >http://synapsepls.home.attbi.\ com/donor.html</A> for more information. Only when PLS is clinically-defined will we be able to see real research for PLS and hopefully then a cure. Welcome again and hope you're in our group for a long time. Gentner Fremont, CA Quote Link to comment Share on other sites More sharing options...
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