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KimT

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In my first spinal tap, they LOST the fluid. They drew blood at the same time and the lab received both the fluid and blood. They did the preliminary on the fluid, then it either went missing or they thought they were done. Nobody knows where the blood went.

I won't say which clinic it was at but they had a pretty good reputation. A neuro did the tap himself. My back was already hurting so the actual puncture, which he tried a few times before he hit the spot, didn't hurt. I drove home. He said if I got a headache go to the ER. It was a two hour drive back home and I got in bed for a couple of hours, then cooked a meal. It was actually less painful and uncomfortable than my dental crown last month.

I was thinking the same thing about AL. In fact, someone asked me what supplements I was taking and I thought about Al's supplements and his plateau.
 

GregK

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Firefighter, we STILL say stem cell clinics are for desperate fools, not just one year ago.
 

KimT

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What makes it better is that it is a clinical trial based on science and run by researchers and doctors who know the disease. The fake stem cell treatments have been going on for years both here and in other countries.

We all know that stem cells can do amazing things and we hope that they will be found to help ALS patients.

The information coming out of this trial will be very important.
 

KarenNWendyn

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Yeah, I sure hope a lot of people enroll and would encourage recently diagnosed PALS to seriously consider it.

I haven’t totally ruled out enrolling but am leaning away from it mainly due to the huge time and energy commitment combined with living a 7 hour drive away from the nearest study site. It’s hard for me to justify 14 visits, all the procedures and all the travel with no guarantee of getting active treatment and no opportunity to get it through an open label extension either. If I lived much closer, I’d be more inclined to go for it.
 

Firefighter58

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Al - I wonder if your plateau might qualify as an "ALS Reversal"? Have you thought about contacting Dr. Bedlack?
Gorby, who is Dr Bedlack I now deal with top ALS doctor in Canada
Al
 

Nikki J

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Dr Bedlack at Duke in North Carolina. Your doctor will surely know him. He is looking for people with documented ALS who have a sustained improvement in at least one objective measure. Alsreversals.com
 

Gorby

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Al - I noticed that Nikki posted the info about Dr. Bedlack. He is doing some interesting work.
 

van1

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The first post states one half of the participants will receive a placebo. I realize why they need to use placebos in clinical trials, but why do they need 50% participants? Would a lower percentage of participants receiving placebo work?
 

KarenNWendyn

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It has to do with statistics. To do a phase 3 placebo-controlled double blind study and get statistically meaningful results, there needs to be a large enough sample size with roughly equal numbers of people on placebo vs active treatment.

This particular study is unique in that there is no open label extension. This means that the people on placebo are not able to receive active treatment following the formal conclusion of the study. This is because the bone marrow samples are thrown away as soon as the study is over for those on active treatment, and right after the sample is taken for the people receiving placebo. Apparently this is because it is extremely costly to store the bone marrow samples at the extremely cold temperatures needed to keep them viable for any length of time.
 

Tedstehr

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Karen thanks for your insight into this trial. It definitely piqued my interest. Al, I think the difference here is the targeting and science behind the procedure, unlike the scammers out there who inject the stem cells back in with no targeting to make sure they are going where they are supposed to go.

It seems like every day I get news from the ALS group on Facebook about different promising treatments. Has it always been like this or are things really starting to happen? It is a bit of a roller coaster ride - one day I think a cure is on the horizon and the next I feel like I should just face reality...
 

Nikki J

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It is certainly different than it was and the doctors seem optimistic

I think for those of us who are not SOD1 realistically we can hope if we are slow in progression and a couple of things come along quickly to slow or stabilize that we might hang on with a decent amount of functioning for a fairly long time. I hope I am wrong but I don’t see a cure for SALS soon

It remains to be seen what can be done for FALS- whether gene blocking will significantly improve function or more stabilize

The many reports you see- look at where they are in the pipeline. Bench and mouse research is very important but we are not going to see anything from that anytime soon. Sometimes though you can look at it and consider whether it gives a clue for a possible supplement to try
 

GregK

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A warning to all reading this...

There is a Doctor Steenblock (DO, if I recall, vice MD) claiming that he can *right now* provide the treatment that Brainstorm is currently running the Ph.III trial on.

Many consider him to be a fraud and a charlatan. He has a long string of fines and licensure violations.

But do your own research. I could be a charlatan as well! ;-)
 

Tedstehr

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I trust you Greg!
 
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