Reflux not progression!

rmt

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About a month ago, I wrote in looking for advice about my husband losing weight due to swallowing issues. There were lots of great suggestions and I'm happy to report he has been able to gain some weight back!

For months his swallowing had been getting worse, his saliva was increasing and he wasn't sleeping very well. And he was making a lot more noise, especially when exhaling. Basically a long sustained grunt that was a bit gurgly, like he was constantly clearing this through. I mentioned it during our online visit with the ALS clinic but nobody had any suggestions.

I decided to check with Dr. Google to see if there were any other things besides ALS/PLS that could be making these things worse, and the first thing that came up was reflux (either GERD or silent reflux). The symptoms sounded just like my husband's. So I convinced him to try using an over-the-counter PPI, H2-Blocker and Tums. He thought I was crazy, but figured it would be worth a try.

Wow, it has made a HUGE difference! In 4 weeks, his swallowing is significantly better, his saliva is much less, he is sleeping better and he is much quieter! He is eating a lot more and choking a lot less. But most importantly, he feels so much better! He is so much happier and seems much more like his usual self. And he can eat things like peanuts again, which is great since the World Series is starting and he is a lifelong Dodgers fan!

It was a good reminder for us that not every issue he has is because of ALS/PLS. Sure, he still can't talk and he still has to be very careful when eating or drinking, but this feels like a great victory for him for however long it lasts!
 

lgelb

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Happy to hear it -- hope you both enjoy the Series!
 
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KimT

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That's great news. I suggest you follow up with a gastro to make sure dosages are correct. I found a lot of relief from Gaviscon as opposed to tums. By all means, keep doing what you're doing but get a gastro on your team. I have one at Mayo and she has helped me more than anyone. She had me do a swallow test to see where I stand in that regard.

Best wishes and thank you for sharing the good news.
 
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rmt

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@KimT , that is great advice! Talking to an actual gastro doctor is a definitely what we need to do. To be honest, I hadn't even though of it! Dr. Google is good, but a real doctor would be so much better! Thanks for the suggestion!
 

nona

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Reflux is the worst! I complained to my (former) ALS clinic about my chronic and violent cough but it was my pcp who diagnosed reflux and prescribed a PPI. What a difference! I'm so glad you figured it out.
 

rmt

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@nona, I think the ALS clinic people are so focused on ALS they forget about other things that are treatable! I can't believe what a big change in quality of life my husband has had by taking the PPI!
 
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