Accupuncture and Chinese herbal supplements

[getkcatt]

My daughter's boyfriend has ALS, was diagnosed 18 mos. ago, and now cannot ambulate without a walker. He is now trying accupuncture and Chinese herbal supplements. They have told him that they will be able to keep him out of a wheelchair and perhaps even get him off his walker. My question is - has anyone tried this treatment and/or had success with it?

 

[Nikki J]

My sister tried acupuncture. It did nothing for her. Who are they and what are their credentials? If this was successful for others I think we would know about it.
There are a couple of Chinese traditional medicines that MIGHT theoretically have a mild effect. One is similar to riluzole chemically

 

[ahl39]

My father was a MD in China which includes formal doctorate level training in Chinese traditional medicine (TCM) as well as acupuncture. We tried all that stuff when my mother was first diagnosed, we tried it for 5 months. We even got a fancy electro acupunture device imported from china that is supposed to stimulate the nerves and muscles more. No observable effect on progression.

If this place is charging you money with those promises, I would at least ask to see their doctorate in traditional chinese medicine (2 to 4 year degree) or at least a doctorate in oriental medicine DOM (a masters degree). If the only thing they have is a NCCAOM license, that's bullshit and anyone can get it.

After our second opinion and confirmed diagnosis. We did the traditional fda approved drugs and some of the experimental drugs, which worked much better.

 

[lgelb]

Some herbs can cause liver and kidney damage, especially if combined with other meds/ conditions. And everything you take requires precious energy to metabolize. Before taking anything, for any reason, I advise everyone to check for interactions at drugs.com.

 

[Serenity]

I actually find accupuncture very helpful. I am fortunate to have found a woman who received her MD in China, and PhD in pharmacology in Japan. Interesting too, she had worked as a staff scientist for over 10 years conducting research in Nueroscience, at the hospital I see my Nuerologist at, and holds the ALS/MND clinic. She now has her own accupuncture clinic.

Granted I am only 6 months in since Bulbar symptoms began, and speach issues still very apparent, but have had no further progression as of yet... I am very sensitive to medications, so while I still have good and bad days, it has helped me overall with my mood. I had tried a couple anti depressants, and just can not handle the side affects, so am trying to go a more "natural" route.

While it may not be for everyone, it has been beneficial to me.

 

[d011p4rtz]

Which experimental drugs have your tried/that worked? Is there any way to access them via expanded access or compassionate use?

 

[ahl39]

We did ibudilast. Which worked pretty well so far. It was just approved for expanded access and there are like 200 spots around the country. You can also purchase them as brand name "ketas" from Japan. Though it can be expensive at 700-800 for 2 months supply