If Ritulek can slow progression..

Status
Not open for further replies.

wrjosh88

New member
Joined
Aug 20, 2008
Messages
6
Diagnosis
11/2006
Country
US
State
Virginia
City
Fairfax Station
If Ritulek can slow progression of ALS, why can't it stop it all together, or reverse the effects?

The more I read about ALS, the more I am confident that a cure is coming soon. But I am still dumbfound that for 137-38 years and no cure!

Has anyone ever heard of someone with ALS having a remission? or Creatine showing promise?
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
You ask hard questions. Conserning Rilutek, it only works for some and only adds 3 to 5 months to their lifespan. Not very encouraging. Unfortunately there is still nothing that is showing promise, there is a lot of energy going into stem cells and I believe that eventually this is where our cure is going to come from.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
People with ALS can have plateau's where they have no progression for varying periods of time. Anybody that tells you they are in remission is lying or doesn't have ALS and they will try to sell you something that they swear caused the remission.

AL.
 

freddiesnetty

Distinguished member
Joined
Nov 2, 2007
Messages
239
Diagnosis
12/2006
Country
US
State
Tx
City
Houston
Amen to you Al, I really respect that you boot all the "gimmicks" that come through here, I get alot of junk emails for quick fixes...thanks again!
netty:mrgreen:
 

Jennifer51

Distinguished member
Joined
Jul 7, 2008
Messages
441
Reason
PALS
Diagnosis
03/2008
Country
UK
State
England
City
London
new trials in the uk

You ask hard questions. Conserning Rilutek, it only works for some and only adds 3 to 5 months to their lifespan. Not very encouraging. Unfortunately there is still nothing that is showing promise, there is a lot of energy going into stem cells and I believe that eventually this is where our cure is going to come from.

I am on Rilutek and must be one of the lucky ones as I noticed a significant reduction in my horrendous twitching once I started taking it 4 months ago...so I am very pleased with it...I would like it to do more....but have to accept its limitations...
BUT GOOD NEWS I was contacted by the mnd association in the uk for my opinion on fundraising.... a simple yes or no answer was all that was required.....I believe the email was sent to all UK members... It seems if they can raise £500,000 and sort out all the issues involved in setting up a trial, then they plan on starting ONE or TWO new trials sometime in the near future. There were no more details about this and it is not yet listed on their website as a new trial...but at least we know something might be about to happen...will try to find out more at next visit to mnd cllinic (funded by mnd assoc) is september....
 
Status
Not open for further replies.
Top