Bulbar ALS - treatment options?

[pm2017]

Hi everyone,
My mom was recently diagnosed with Bulbar onset ALS.
We are desperately trying to find some alternative treatment options besides her regular medication.
I read some previous threads with really good information but wanted to check again if anyone had recommendations regarding clinical trials, stem cell or any other alternative options. I would also appreciate to hear your experience if you have been through one of these kind of treatments.
If you can direct me to threads where this has been discussed previously, that would be great too.
Thank you.

 

[GregK]

Be careful, you sound like a prime candidate for scammers.

You will see charlatan after scammer after liar.

In the US there are two treatments for ALS: Riluzole and Edavarone. That's it. Two.

Anyone that tells you different is a liar and a scum.

There are treatments for some ALS _symptoms_ such as cramping or lethargy. Many of us have found medical Marijuana to be helpful, one such discussion is here: https://www.alsforums.com/forum/als-research-news/31948-cbd-thc-etc-dosage.html

Brainstorm is trialing their stem cell technology, but the clinics do not offer these.

You're doing the right thing by asking, be sure to ask here and on FB if someone offers you a "cure" or "treatment"!

 

[Nikki J]

If your mom is not taking nuedexta please ask about it. Some have found either temporary improvement or temporary stabilization of bulbar symptoms with it and there was a clinical trial validating the anecdotes

It is for emotional lability which often happens with ALS but people reported other benefits which is why they did a trial

 

[GregK]

Here is some info on the Brainstorm effort

https://alsadotorg.wordpress.com/20...tter&utm_medium=email&utm_campaign=august2017

 

[pm2017]

Thanks Greg and Nikki.
So thankful for this forum and you guys.
We had contacted few stem cell clinics and got immediate responses. One clinic we were considering is NSI stem cell. Have you heard about this place? I'm skeptical now after reading your comment and several other threads, but just checking.
Also, we came across a hospital in China that offers acupuncture and personalized herbal tea supplements- Zhongfang Red Cross International Hospital. Any thoughts on this?

Nikki, Thanks for the suggestion on Nudexta. She is not currently taking it but I remember our neurologist did bring it up. I'll get it for my mom to try soon.

 

[Nikki J]

I looked at the NSI website and it looks like all of the others. Commercial stem cell clinics are not using any proven science. Please don't fall into the trap of spending lots of money chasing these things. Money and precious time.

Riluzole, nuedexta, maybe radicava. If she is bulbar looking at a feeding tube early so she can stay hydrated and keep weight on. Losing weight is really bad. Consider looking at a clinical trial. If her breathing is affected does she want bipap?

Honestly, nutrition, proper rest and enjoying life ( trips? Family parties? Just spending time together) along with supporting breathing are things that will make her life better.

There are a couple of things in the pipeline that MIGHT be available in the next year to help slow things.

 

[Kristina1]

Hi, I'm also bulbar onset. I just wanted to echo Nikki about Nudexta. I started taking it when I was diagnosed in March. It was prescribed to me for emotional liability. Funny thing is, it has helped my bulbar symptoms better than my emotional liability! I saw an immediate, significant improvement in speech, swallowing, and saliva. It has been 5 months and now I feel it is "wearing off". I feel I am back to the place I was (in terms of speech, swallowing, saliva) when I was first diagnosed. But with ALS I feel 5 months is nothing to sneeze at. That's five months of eating foods I love, recording my voice, and so on. I asked my neuro if I can increase the dose of Nudexta now in hopes of re-gaining bulbar improvement, but she said it is not approved for that.

 

[GregK]

STEM CELL CLINICS ARE SCAMS.

Do NOT Go to a stem cell CLINIC!!! They prey on desperate fools! Please don't be a fool.

Reread what I said about Brainstorm: It's NOT available from a CLINIC!!!

They are ripoffs!

 

[Inventor]

Nuedexta is dextromethorphan combined with quinidine to improve biological half time. In addition to Nuedexta, there are compounding pharmacies in the US capable of making unbranded dextromethorphan/quinidine at fraction of the cost of Nuedexta.

 

[Firefighter58]

I agree with Greg, stay away from all these scams, they only want your money and are proven to produce NO RESULTS !!!!
Al

 

[pm2017]

We are going to start Nudexta soon, hoping for the best.
And we will stay away from these so called clinics. Thanks for your feedback everyone.

 

[Tedstehr]

As per Greg's empassioned comments, I asked my ALS neurologist about stem cell research. He even had it listed on website as something he had been involved with. But he told me, with no hesitation, that they have had no indication whatsoever that the stem cells introduced to the spinal fluid have ended up where they need to go. That included the cells harvested from the patient's own spinal bone marrow or some external type.

And when you read the link to Brainstorm it seems very elusive as to their success. If it worked, it would be much easier for them to describe! I suppose when you are in our position you can grasp and any solution that sounds like it might work.

Listen to Greg!