Roll call for "NEW" ALS treatments
 

Hi All,

I am starting this new thread because of BT being down for a long of time. PALS & CALS fanned out to other ALS sites. Are there any "new" treatments out there? Good, Bad or Scams ....

Jeff,
Difficult as it is to admit. There's still no "proven" effective treatment for ALS. There's plenty of snake oil salesman peddling their scams. OEC treatment in china and various other countries is the most expensive scam I've heard so far.

Hi Dave,

This is why I have started this thread. I know all to well about the predators that patrol our ALS community. I have noticed some new screen names here and if they are anything like I was i.e.;scared to admit what they're using in their regiment, thinking they have found an affective herb, combination of detoxification pills, therapies of all sorts, snake oils, so called stem cell surgeries ..... Hopefully veteran's like ourselves can prevent new PALS from becoming victims.

Jeff

Jeff,

I know where you are coming from. After almost 4 years I finally paid off the loan that I took to get HUCB. Money that could have been much better spent on a mini-van. Water under the bridge.

ALS is a scam artist's dream come true. People get hit like a hammer with this little-known deadly, paralyzing with no treatment and little hope for one disease all in the matter of months. The first year is almost certainly the most likely time that PALS will be taken. New PALS including myself have a simple logic. There is nothing out there. The longer I wait, the worse I'll be. I'm not going to be here in a few years and in a lot shorter time, I'm going to be paralyzed. I need to ACT NOW!

And so far, what that leads to is to be thousands of dollars poorer, still with ALS and a nagging feeling that a perfectly healthy SOB is living the good life off of your life savings and hard work.

It might have some benefit to warn PALS but in reality its very difficult. To tell new PALS to hold off is in their mind is to subtly tell them what their doctor has already done so which is to accept the inevitable. That is never going to be acceptable to new PALS. So every years the sharks will seek their prey.

Wayne..I don't know...I do think old PALS/CALS can help new ones...and learn from their experiences...
Though you and I may disagree that HUCB may have helped some people short term..we both "do agree" no one could ever afford $25,000 once every 6 months...which is the "longest" anyone reported gains ..and even at that several people like yourself felt they had no benefit... at the time though none of us knew what was going to happen..so it is a different perspective we have now..hindsight is 20/20...the way my husband feels is he doesn't regret trying anything that was never tried or explored before.... to him it was worth trying back then..but heck no $25,000 is not worth it for others to follow suit..give it too him for free..that's a different story he'd be the first to volunteer for HUCB...but being bankrupt for such short term efects wouldn't be worth paying $25,000 over and over again out of pocket.. he'd go bankrupt quick and still have ALS ...
Hopefully some of the treatments that are proclaimed as new can be twarted...
Infact at OBT I just got finished a few days ago with a post to someone talking about "new " embryonic stem cells in another country..nothing was new about it..
Veterans won't prevent all the sharks but maybe some...especially the more people who speak out..Lisa