Recent content by Big Mike

Neurontin is a glutamate antagonist

[/B] I can't. No leakage of air when I'm on my side but not longer after turning on my back, my mask starts leaking air in one or more spots, and it drives me crazy. Any thoughts on how to remedy the problem?

Yikes! Can anyone say steroids?

Sorry Jeff, I couldn't disagree with you more--stem cells ARE the future for treating ALS. Many overseas trials/treatments are not legitimate and those that are happen to be far more simplistic than the ones being developed now.

Thanks for the post, curetime. Hopefully they can get the treatment into clinical trials within 2 years, not five.

Hi Dan, Sometimes a company will allow "compassionate use" of its treatment once it reaches phase III (if approved by the FDA). This makes it available to patients outside of the trial protocol. TCA Cellular Therapy recently applied for a compassionate use protocol with the FDA, but they're...

N-acetyl cysteine and probiotics help me with mucous secretions.

It would not surprise me at all if many sporadic cases of ALS turn out to be genetic in nature. I have had many odd symptoms over the years and have suffered from OCD (obssessive compulsive disorder) since adolescence. ALS might be a much longer disease process than anyone ever imagined.

That may be changing in just a few years. There are clinical trials going on now for als using stem cell treatmens. And they are legitimate trials.

I hope you're feeling better, AL. :smile:

Marijuana helps tremendously with my spasticity and clonus. It also appears to help slow down progression in some patients. This is discussed in other threads.

Thanks for the link, Aleta. Some good information on those videos.

I disagree with your statements. Not all ALS patients are on vents past 20 years, and there are different variants of the disease, so you can't say none of them have ALS. Also, ALS does become a chronic disease if treated fully and complications are avoided as much as possible. We all know how...

If approved, the eligibility requirements for the expanded access program will probably be looser than those of the clinical study protocols. At least I hope so.

Well, even if you can't swallow, you can still taste. I've heard of PALS who do that.