PLS diagnosed affecting bulbar region only

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Judith

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Has anyone been diagnosed w/PLS and have it affect the bulbar area only?
It seems that most people diagnosed w/PLS have it affecting the arms/legs and trunk area as well.
My symptoms started in Feb. of '04. It started out with my throat closing up and I would speak nasally. Then I started slurring my speech and now I use a writing board, cuz I can't be understood. My husband and my sister can make out some words, if they look at my lips.
Chewing and swallowing has gotten more difficult. And sometimes I drool.
At first, my neuro diagnosed me with PBP (progressive bulbar palsy). Then I had a 2nd opinion at UCLA and they diagnosed me w/PLS. My neuro now thinks PLS is a more correct diagnosed.
The EMG/NCS came out clean on both occasions.
I'm praying it stays isolated in the bulbar region and doesn't affect the other areas, or even turns into ALS.
 

brooksea

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Judith,

I don't really know that much about PLS, except from a few that I've communicated with that have it.

It seems to slowly progress - much slower than ALS. So you may have the bulbar symptoms for a long while before getting any weakness in your legs, etc...

I'm sure some others could comment more intelligently on this.

CJ
 

Raina

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PALS
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Hi Judith

My husband has also in the last few weeks been diagnosed with bulbar onset PLS, symptoms started around the same time as yours, Feb 04. Dave started with slurred speech, but now has pretty bad (nasal) speech (we watch his lips a lot as well) and swallowing issues as well, and has the throat close over thing happen quite a bit. Last visit to the neuro a few weeks ago the neuro noticed a bit of stiffness in Dave's hands, but at this stage very minimal. From what I have read the longer you have only bulbar symptoms, the less likely it will change into ALS.

Sounds like you both have pretty much the same issues. I have found this site a huge help to me, I hope it is to you as well.

Raina
 

CindyM

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Hi Judith-welcome to the site. My impression is that bulbar onset is harder to deal with-maybe because people miss communicating. It must be difficult now that chewing and swallowing has become an issue. Sounds like you did the right thing to go to UCLA. I am assuming that was an ALS clinic? I'd go ahead and get registered with my local ALS chapter sooner, rather than later. Not to scare you but eating and communicating are two important abilities and they might be able offer eguipement if you ever need it at some point...Regards, Cindy
 

Geo

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BulBar Symptoms First

Hi Guys im New and Yes My original Symptoms were Bulbar .Doc First Thaught Psuedobulbar Palsey . Then Symptoms went to the Balance then the Legs and arms
This Is a Slow Disease . Heres My Thaughts .If You Start Bulbar These will be what Ultimately will Be to Our Demise. Being Im 7 years now And Being That I started Bulbar
I started Choking(Bulbar Muscles ) on cold Liquids .Then Found That If im careful when swallowing i can keep liquids to the left going down im fine. As Time goes on im finding I choke on liquids but im not getting Aspiration in my lungs . I went to Vital Stim Therapy for a while . The Idiot There didnt want me back ,gave the excuse im alot better . Well i bought my own TENS EMS Machine and do my own stimulation on my throat muscles .
I feel this has helped me tremendously .Otherwise you may get Aspiration Pneumonia
Dont wait for your doc. to mess around .Be Proactive after all its your body

Geo :cool:
 

patricia1

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newjersey
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lopatcong NJ
Yes I agree I have Bulber onset 8 years All I had was slurred speech I felt wonderful worked went to the Gym Did 12 hour work days and then in 2005 I started to fatigue and have more trouble being understood and became frustrated. I mean if it wsnt for the speech I was otherwise well Thats why I thought it was nothing and oit would go away or maybe it was my nerves it took 6 years to effect my arms ,if I am very careful about eating I am ok I know I cannot eat Cherrios and milk or soup with veg or drink while I have food it my mouth. This is because mixed food are hard to control with a athropy tongue Moving solid and liquid is very tricky. I learned to be careful Hope it continues to be slow. Pat
 
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