Old 04-02-2008, 06:09 PM #1
Geo's Avatar
Geo Geo is offline
Senior Member
 
Join Date: 2007
City: Ruskin
State: Florida
Country: US
Diagnosed: 12/2001
Interest: I have been diagnosed with UMND/PLS.
Posts: 500
Geo is on a distinguished road
Geo Geo is offline
Senior Member
Geo's Avatar
Join Date: 2007
City: Ruskin
State: Florida
Country: US
Diagnosed: 12/2001
Interest: I have been diagnosed with UMND/PLS.
Posts: 500
Geo is on a distinguished road
Cool Maybe good news

I got my MDA /ALS newsletter today and it says a new treatment could be on the horizon . VEGF-B a protein called Vascular Endothelial Factor -B appears to prtoect nerve cells without causing unwanted proliferation of blood vessels . They gave this to a Begium co. to study .Wander how long that study will take HMMMMMMM . Edothelial Cells are on the end of the blood vessels going to the brain ,this is where everything going from the blood to the brain is transfered . Geo
Geo is offline  
Old 04-18-2009, 08:48 PM #2
rocmg's Avatar
rocmg rocmg is offline
Member
 
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
rocmg rocmg is offline
Member
rocmg's Avatar
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
Default

Found this doing a search...

I've heard good things about this VEGF -- all the big time neuros *seem* to be in agreement -- it's a shame it's going for take several more years for this to jump through all those regulatory hoops.... it's been on the cards since before 2004 I think?
rocmg is offline  
Old 04-18-2009, 08:49 PM #3
rocmg's Avatar
rocmg rocmg is offline
Member
 
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
rocmg rocmg is offline
Member
rocmg's Avatar
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
Default

p.s. maybe this should be moved to the research/treatments arena? just a thought.
rocmg is offline  
Old 04-19-2009, 08:49 AM #4
sral sral is offline
Member
 
Join Date: 2007
City: toronto
State: ontario
Country: can
Diagnosed: n/a
Interest: I am interested in learning about ALS/MND.
Posts: 289
sral is on a distinguished road
sral sral is offline
Member
Join Date: 2007
City: toronto
State: ontario
Country: can
Diagnosed: n/a
Interest: I am interested in learning about ALS/MND.
Posts: 289
sral is on a distinguished road
Default

There is an individual that has been widely broadcast in italy who is using this and swears by it. He says that it has completely stopped his progression.

There is a drug called IPLEX that is suppose to be along the same lines as VEGF but much better. For controversial patent issues it was not given to anyone outside of Italy (they had a special contract). Any way, there have been a select few in the US that have been given permission to use this and have started as recently as early April. Everyone else has to apply to a clinical trial to test out and if you're lucky you get selected for the trial and if you're even luckier you'll be in the test group and not placebo.

How unfair !

Anyway, regardless of how this goes, it may be years before anyone outside the trial or sample few, will get it.
sral is offline  
Old 04-19-2009, 02:24 PM #5
rocmg's Avatar
rocmg rocmg is offline
Member
 
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
rocmg rocmg is offline
Member
rocmg's Avatar
Join Date: 2008
City: N/A
State: N/A
Country: UK
Interest: I have been diagnosed with ALS.
Posts: 388
rocmg is on a distinguished road
Default

hi sral. i think IGF-1 plus a protein binding product constitutes IPLEX. tests on IGF-1 minus the binding product proved ineffective in ALS clinical trials which is why so many neuros (rightly or wrongly, time will tell) are disinclined to have PALS try it. The argument was made that IGF-1 plus binding protein (IPLEX) is actually a different drug than the one that was tested. The FDA allowed American and Italian PALS to try Iplex.

VEGF is actually a different thing totally a part from Iplex although it is a growth factor. It is Vascular endothelial growth factor, and excitement about its use is based on research which posits damage to blood vessels surrounding the spinal cord/ brain stem as being a cause of ALS. they're trying it out in Sweden at the minute. But, yet again, the reports of these clinical studies are a very long way off and even if it were proven effective in ALS, it will take some time for it to get into patients' hands.
rocmg is offline  
Old 05-01-2009, 07:58 AM #6
Big Mike Big Mike is offline
Member
 
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Big Mike Big Mike is offline
Member
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Post

If you check out the ALS TDI forum, there are some speculative discussions about how antidepressants, especially ssris, may boost VEGF levels, thus slowing the progression of the disease. I have been on Luvox for many years, and I seem to be on a track for a relatively slow, progressive course.
Big Mike is offline  
Old 05-03-2009, 11:38 AM #7
patricia1 patricia1 is offline
Very Helpful Member
 
Join Date: 2006
City: lopatcong NJ
State: newjersey
Country: US
Diagnosed: 7/1999
Interest: I have been diagnosed with ALS.
Posts: 1,150
patricia1 is on a distinguished road
patricia1 patricia1 is offline
Very Helpful Member
Join Date: 2006
City: lopatcong NJ
State: newjersey
Country: US
Diagnosed: 7/1999
Interest: I have been diagnosed with ALS.
Posts: 1,150
patricia1 is on a distinguished road
Default

I have heard this so many times before . I just dont believe any of it. It always seems to fizzle out.
Pat
patricia1 is offline  
Old 05-06-2009, 06:58 AM #8
Big Mike Big Mike is offline
Member
 
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Big Mike Big Mike is offline
Member
Join Date: 2009
City: Fairfield
State: Montana
Country: US
Diagnosed: 12/2008
Interest: I have been diagnosed with ALS.
Posts: 322
Big Mike is on a distinguished road
Post

Quote:
Originally Posted by patricia1 View Post
I have heard this so many times before . I just dont believe any of it. It always seems to fizzle out.
Pat
You may be right Patricia, but I will never quit taking Luvox as I seem to be a slow progressor. Plus, it helps mightily with my obsessive-compulsive disorder.
Big Mike is offline  
Old 05-15-2009, 11:22 AM #9
joelc's Avatar
joelc joelc is offline
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,787
joelc is on a very distinguished road
Default

Sorry but they make some claims that need to be verified by a reputable source.
joelc is offline  
Closed Thread

Tags
als, brain, treatment, wanted


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
When Bad News Is Good News swalker General Discussion About ALS/MND 26 01-03-2016 10:43 PM
Great News for Vets; Good News for Others 2nd Ed. Graybeard Military Veterans and the VA 14 02-28-2015 09:14 AM
Great News for Vets; Good News for Others Graybeard Military Veterans and the VA 49 10-13-2014 10:27 PM
Good news & bad news... what a pair! Jeff Long People With ALS - "PALS" 34 12-01-2011 06:20 PM
Is this good news or bad news? NotALS! Do I Have ALS? Is This ALS? 17 09-09-2011 09:23 AM
Some good news dldred General Discussion About ALS/MND 10 06-04-2010 10:36 AM
Good News! JOSIEM02 General Discussion About ALS/MND 5 09-02-2009 02:33 PM
Good News dadspooh General Discussion About ALS/MND 3 08-11-2008 10:52 AM
some good news baker5131 Current Caregivers (CALS) 3 05-13-2008 01:08 PM
Good News/Bad news ltr General Discussion About ALS/MND 28 03-18-2007 05:26 PM


All times are GMT -5. The time now is 03:15 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016