Looking for ways to slow Bulbar Onset ALS progression

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PrimaVera

New member
Joined
Apr 23, 2020
Messages
9
Reason
PALS
Diagnosis
03/2020
Country
US
State
CT
City
Shelton
Hi Everyone,

How many of you had Bulbar Onset ALS (slurred speech, trouble chewing and swallowing)? Has anyone found ways to slow or reverse progression of those issues? I tried Neudexta for about two weeks, and it helped quite a bit, but made me very anxious, had a heavy feeling in my chest, and it seemed to irritate my bladder. I will be restarting once a day to see if a half dose can make a difference w/o ramping up negative side effects.
 
There is no way to slow or stop progression,that what the world of ALS is seeking.
Al
 
I have found that maintaining my weight seems to correlate with slower progression. My progression has sped up during periods of weight loss. You may need to change your diet towards smoothies or puréed textures, or get a feeding tube.
 
There is no miracle drug. Every case is different and people respond differently to different meds. I have bulbar onset and have been taking Nuedexta for five years. It is hard to say whether it affected progression or whether progression is what it is. There might also be a benefit to starting Riluzole early on. Good luck!
 
My initial symptoms were foot drop and leg weakness but 2 weeks prior to my diagnosis I began having trouble chewing, swallowing and speaking clearly. One of the first things done during my first hospital stay was a chest x-ray and a Thymoma was discovered. This led my neuro to think I could have myasthenia AND ALS. I had 6 rounds of Plasma Apheresis 2 years ago and that helped tremendously with my speech and eating. I have no idea if that would help you but figured I would share my story.
 
Hi PrimaVera- I have to concur with others who say there’s no known way to reverse any of the symptoms of ALS. However, my personal experience has been that as new difficulties appear I learn ways to adapt and minimize the effects as much as you can and things seem to improve for awhile. For example, tongue and cheek biting were worse when I first started having that but I’ve learned to slow down, be very careful and eat differently. As my voice volume decreases and slurring increases I have adapted by slowing down my speech, enunciating as distinctly as I can, rewording, shortening my sentences, aiming my voice and pushing the volume as much as I can when it’s important. I’ve got a voice amplifier that I use sometimes too. Not saying my adaptations are special, I think all PALS do the same thing with all of our decreasing abilities. At first they seems like a big problem and then we figure out a way to keep plugging along - not really improving but adapting. Cause you have to. Good luck!!!
 
You may need to utilize a cocktail of meds. So take nuedexta for the benefits and Ativan to alleviate the nervousness, vesicare for bladder control, etc.
 
I'm no use to the OP, however, Don, you might want your doc to take a look for glycine receptor antibodies. I was first diagnosed at the U of I, but when I went to Mayo, they began an antibody hunt. They looked for GAD and for glycine receptor antibodies. I was positive and then they looked for a thymoma - thinking I had Stiff Person Syndrome instead. I did *not* have a thymoma, but it would have changed how I was treated. I did IVIG (no improvement) and did Rituximab (no improvement) thus MND/PLS initially. But if I were you and I had a thymoma and saw improvement with IVIG? I'd want GAD and GlyR numbers and a round of Rituxan/Rituximab. I tried to message you but was unable.
 
I agree with Doglady, you have to play the hand you were dealt, no need to cry and moan about it. This site helps you to learn to live with ALS.
 
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