Bulbar onset ALS - or bulbar palsy?

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MLOx

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Dec 24, 2010
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Loved one DX
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WA
My mom was recently diagnosed with Bulbar onset ALS. However, she doesn't have any limb involvement, weakness, or coordination issues that are consistent with ALS. We had thought she had Progressive Bulbar Palsy. My question is--for those with knowledge about Bulbar onset ALS and/or Bulbar Palsy do most BP's eventually lead to Bulbar ALS and that is why this diagnosis? In addition, I would be very interested in individual stories about folks dealing with either. Thank you for your time, I'm glad there is a place for people to connect!
 

BarryG

Extremely helpful member
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Nov 19, 2008
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Diagnosis
02/2008
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Alberta
I was diagnosed with bulbar ALS in Jan 08 with my first symptom of slurred speech in July 07. It was over a year after my diagnosis before I had any limb issues and I now use a walker and wheelchair.
 

MLOx

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Dec 24, 2010
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WA
Thanks for the info! I'm inspired. I recall reading some of your old posts, Elf is a great character! My mom had speech problems this summer, we are now looking for some speaking technologies. Have a great holiday!
 

tdcrotty

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Dec 26, 2010
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AB
hello.

my mother was diagnosed with bulbar onset als after many mis-diagnosis. it was a horrible progression and very difficult for all involved. if you have more questions or need support contact me anytime.

D
 

KinzaDAF

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Jul 30, 2009
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Illinois
My dad was first diagnosed with Bulbar Palsy and had only slurred speech at that time. Although his speech gradually deteriorated until we could no longer understand it, it was another 7-8 months till he started having trouble walking. (Somewhere in there the ALS diagnosis was made, though I personally believe the BP was just as way of saying ALS was on the way. Sigh.) Unfortunately after that, things progressed very rapidly. Dad died this past March, about 18 months after first symptoms. My heart goes out to you. I know this is all new and scary stuff. There are many wonderful people here who provided support for me and I'm sure they will be a great help to you too.

Debbie
 

MLOx

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Joined
Dec 24, 2010
Messages
34
Reason
Loved one DX
Country
US
State
WA
Thankyou all for your posts, information, and encouragement. The fourm is really helpful, I have been reading a lot of posts using the tags and have found it helpful. I also have found it hopeful, the articles on the web are a little more discouraging and negative, reading so many personal stories has been encouraging! Thank you all.
 
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