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Gracie

Active member
Joined
Oct 28, 2007
Messages
63
Diagnosis
09/2007
Country
US
State
PA
City
Altoona
My husband and I began this horrible rollercoaster ride in June of 2006. We both just retired with expectations of traveling and new experiences. We certainly have traveled from one doctor to another, from one MRI to another, from one nerve study to another, from one pain management doctor to another (well enough of that) I am sure everyone has a similar story to tell. The first diagnosis was ALS which could have knocked us both off our chairs, then after the nerve study came the second diagnosis PLS. Not knowing what PLS was we thought this is good at least it wasn't ALS (wrong). We are learning everyday how to cope and fear what is learing down the road for us. We are waiting for the second appointment at UPMC in Pittsburgh, PA. We are hoping this forum can shed some light on this horrible condition or maybe just a glimmer of hope at the light of a very dark tunnel. Symtoms at this point clonus of right foot, hyperflexia both legs, Babinski syndrom right knee, spasms both legs and sometimes arms with a skin crawling sensation and sleep pattern dimenishing rapidly. Just started Baclofen. Pretty depressing isn't it. Enough for now, thanks for listening.
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Well Gracie if you read my posts they shed alot of light on this subject and some hints on coping i have been since 2000 so . You need to educate yourself because you are not going to get alot of info from a doctor . This disease is so rare they only think theres 1000 patients currently out of a population of 300,000,000
unlike ALS where there are 5-6000 new deaths every year, when i last checked . I beleive a virus is responsible . Our Medical society to this day will not admit it ,there was one MDA Doctor who beleived this and now you dont hear from him . In our society if you think outside the box you get punished or scolded .
Your in the right place for PLSers .Geo
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Gracie and welcome to the fourm. You are right that this is a life-changing experience! I hope we will be able to help a little. Cindy
 
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