Maybe good news

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Geo

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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
 

rocmg

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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

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p.s. maybe this should be moved to the research/treatments arena? just a thought.
 

sral

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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.
 

rocmg

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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.
 

Big Mike

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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.
 

patricia1

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I have heard this so many times before . I just dont believe any of it. It always seems to fizzle out:-(.
Pat
 

Big Mike

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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. :)
 

joelc

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Sorry but they make some claims that need to be verified by a reputable source.
 
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