statistics/survey on pls

[olly]

i found some info i have not seen before including a pls survey that is intresting to look at.
http://www.wrongdiagnosis.com/p/primary_lateral_sclerosis/stats-country.htm

take care
caroline:-D

 

[Whitsend]

Thanks Caroline. I took the survey and when I looked at the results lo and behold, very few people have completed the survey. Of course, very few people have the disease.:-D

 

[Geo]

Last i checked ,i read 2,000 PLSers in US which has a Population of 300,000,000 Mil. ,I read 5,000 new deaths every year for ALS in US . Ive also read alot of People don't Keep going to a doctor so alot of Stats Get lost so my geuss is 5-7,000 PLSers . Keep in mind we have alot of People who have no internet or Insurance so they just go off and disapear .If you go to a free clinic they just send you home . I like the survey and all But If you have Leg weakness ,of course you would have Issues with walking or if you have balance issues you would have a hard time walking . So when you make a survey ,you should have alot of input to make sure you dont make a double sided question . The real shame is under HIPPA we cant have a national figure Like at National Institute of health . Doctors dont share health info of Patients . I dont know why they cant just say the stats and not the names . If you have West Nile Virus though and confirmed .they have to by law report it to the Center for Disease Control (CDC) OOOOOOH Well Welcome to the US ,Full of Red Tape . Geo