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  • Hi Patsy, I was nosey-ing around the forum looking for long time als people and came across you - my sis has the non-bulbar form and has lived 12 years. I think the type of als - bulbar or not determines the length. It seems its taking its toll now. I am inspired when I see others who are fighting that good fight - kudos
    Hi patsy not sure if u left me message pls Sorry to my unfortunate luck it's definitaly als took two years to dx me and even after that I didn't accept it I keep going to the best of the best and time and time again I heard the same answer it is als.as a matter of fact if u look him up my dr.is dr. stanley appell heads the texas chapter as well as the research that augie nieto has so to my regret it is ALS. I wish I could have proved them different even after five years later 2005 I went to get checked again with Dr.Appell because my nuerologist in San Antonio another doctor that takes care of als patients wanted him to rerun test cause I was not progressing as fast as they expected . stayed in Houston 3 days only to be told the same thing ALS DEFINITELY IS WHAT HE SAID
    12 years patsy its been 10 dx and 12 onset 4 me.I'd like 2 talk more please visit me at stories of hope living with als 10 yrs. I would like 2 know how many are out there that are actually living over 10 yrs.and still self sufficient.
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