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Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Hi,

Anyone out there with bulbar onset PLS. My hubby Dave (currently undiagnosed) has speech, swallowing, emotional lability, slow blink reflex, excssive yawning. It has been over 3 years now, still no lower motor involvement.

Thanks in advance.
Raina
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
Raina said:
Hi,

Anyone out there with bulbar onset PLS. My hubby Dave (currently undiagnosed) has speech, swallowing, emotional lability, slow blink reflex, excssive yawning. It has been over 3 years now, still no lower motor involvement.

Thanks in advance.
Raina
Hi Raina, I was diag. 2005 als . see my profile. I have all those symptons. I have lower involvement also. Some times my eye on left side sticks. I'm so sorry about your husband. I think I feel worse for my husband than i do myself. Hang on to GOD he will carry you through. Jan franks feel free to private mess me anytime
 

Raina

Member
Joined
Jan 7, 2007
Messages
12
Reason
PALS
Country
AU
State
Western Australia
City
Bunbury
Hi Jan

Thanks for posting a reply. I am sorry about your diagnosis, I wish you strength. i was wondering if you could tell me how long after your bulbar symptoms did your lower motor involvement start?
Thanks
Raina
 

Lynn555

New member
Joined
Dec 22, 2006
Messages
9
Reason
Loved one DX
Country
US
State
CA
City
Chatsworth
bulbar onset PLS

Hi - my mother just got diagnosed last week with PLS. She previously was diagnosed at the Mayo Clinic with PBP (progressive bulbar palsy). We were sure she had bulbar ALS. But it's progressing so slowly and is still mainly bulbar involvement. She's had bulbar symptoms for over 8 years now. It started with slurring her words and then it got more and more difficult to form the words, and she then had trouble chewing. She can't talk at all anymore, but she can still eat soft foods, and she can swallow okay for the most part. She lost 40 lbs., but she now supplements her food with Ensure Plus, and now her weight has been stable, so she has not gotten a feeding tube.

Her limbs still test strong, but I think they are getting stiff, and she has fallen a few times over the past couple of months. She has a cane, but she doesn't use it. But she holds on to her husband when she walks, if he's around. And the doctor just signed for her to get a handicapped parking placard. She also has emotional lability.

It's been so difficult getting a diagnosis. They keep guessing - maybe this, maybe that. But at least PLS is not as horrible as some other diagnoses - it's very slow moving and can take decades to progress. And it is not fatal. At least, that's what I've found when researching it on the internet. So that is really good news! We'll take what we can get.

But yes, all of these MNDs are very difficult. My heart goes out to all of us - patients and caregivers! :)
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
I to started 8 years ago with Bulbar involvement But now after 6 yearas it went into my arms and I still am eating and breathing and talking the same That hasnt changed But my doctors said because of my over acting reflexes in my legs its there too even though I can walk I quess its moving slow but will be in my leg sooner or later Pat
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
US
State
Virginia
City
Harrisonburg
My pls started with bulbar symptoms...

Raina!
My symptoms started several years ago with the slurring of a word here and there( much to my astonishment ). I couldn't figure out why I sounded like I was "drunk" at times. So it got to be more and more words that I slurred over the next few years. I also had started becoming more and more emotionally "incontinent" but I chalked it up to Peri-menopause since I am around that age. Then I began to choke easily on certain things and my own spit. I was experiencing dysphasia and then for a while I began to experience panic attacks when eating in public...I could not eat in a restaraunt until I started taking an anti-anxiety antidepressant. I finally got used to it so I no longer need the drug. Then I noticed the longer and more I talked at one time the more it started sounding like I was pinching my nose when I talked. I was told the "valves" in my throat and nose were not opening and closing in sync. I went to a speech therapist.
3 years ago I noticed that I was falling easily and that was totally foreign to me. The next year I noticed my legs were feeling heavy and last year my legs began to stiffen. I was finally diagnosed last summer. I walk with a cane outside the house. Its hard to get out of my car and off of low toilets. I have weaker shoulders, ankles, and hips ( Iwent to physical therapy and they showed me exercises I can do ). In the house I equate my walking as that of a toddler. As long as I can get around I am happy.
 

Judith

Distinguished member
Joined
Jan 31, 2007
Messages
338
Reason
DX UMND/PLS
Diagnosis
12/2006
Country
US
State
CA
City
Yucca Valley
PLS - bulbar region only

Hi,
I'm new to this site.
In Feb. of '04, I noticed when I got upset or angry my throat felt like it closed up and I would speak through my nose. This didn't happen all the time, just randomly. It didn't happen at work either. I dismissed it. Thought it would go away. After about 3 weeks it was still happening so I went to the doctor. He thought it was stress related and prescribed Lexipro (anti-depressant). I didn't take it. I thought I could work it out on my own. In October of '04 it started happening at work. When I would speak I'd have to swallow after about every 3 words. It almost resembled panic attacks. I went back to the doctor and started taking the Lexipro. The symptoms gradually got worse. I went to another doctor and she thought it might be allergies or a psych problem. So I jumped through those hoops and it kept getting worse. I had to switch what I was doing at work, because my speech got so bad. I finally retired at the end of '05. In Feb. of '05 I went to another doctor, who right off the bat said he thought it was a neurological problem. So I went to a neurologist who gave me the shock of my life. MND. I had no idea what a MND was. He thought I should have a 2nd opinion. I went to another neurologist at Loma Linda who thought it was progressive bulbar palsy (PBP). The EMG/NCS came out clean. She thought I should have yet another opinion. So I went to UCLA and had a consultation in the morning by one neurologist and another EMG in the afternoon by another neurologist. Their conclusion was PLS, which my neurologist at Loma Linda thinks is a more accurate diagnosis that PBP. My symptoms are only in the bulbar region. I do have trouble chewing and choking (mainly on my own saliva). Only my husband and my sister can understand me some of the time (if they look at my lips). I use a writing board to communicate. My arms, legs, trunk are fine. It's been 3 years since the onset and I seemed to have stabilized. I try not to dwell on it, but hey, it's just always there. I'm a born again Christian and know that God is in control. I trust Him completely to work in my life in what ever manner He desires. He is my strength every minute of the day. It is hard to be social because I feel out-of-the-loop, but I push myself and it usually turns out all right. I am very thankful that it has remained isolated in the bulbar region thus far.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Judith. Welcome to the forum and we hope you stay stable. Hope we'll be able to help with answers if you have any questions.
AL.
 

Aldous11

New member
Joined
Sep 7, 2010
Messages
1
Reason
PALS
Diagnosis
11/1987
Country
ny
State
USA
City
NY
Bulbar symptoms such as dysphagia and dysarthria are frequent features of ALS and can result in reductions in life expectancy and quality of life. These dysfunctions are assessed by clinical examination and by use of instrumented methods such as fiberendoscopic evaluation of swallowing and videofluoroscopy.
 
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