Monterrey, Mexico.....New Hope - Page 7

rocmg · 11-17-2009, 01:54 PM

Quote:

Originally Posted by clippedwings

Hal, I reread your post again and have a question. Are you saying that lower motor neurons exist as high as the brain stem? This would make the migratory route for new stem cells quite short.

brainstem is structurally continuous with spinal cord. i think if there is a chance cells could migrate from the brain then they would reach the brainstem first. it would be nice to think the body knows how to use such material to heal its hurts...

halfin · 11-17-2009, 07:54 PM

Yes I think the brain stem does contain lower motor neurons, at least in some parts. It's all very complicated though, I am just trying to learn what I can.

I found a textbook on neurochemistry which has some info on anatomy too. The cerebrospinal fluid does circulate. The cells lining the cavities that hold the CSF have cilia, microscopic fingers that wave and help keep the fluid moving. I don't know if there is a general flow or direction of circulation through the brain and spinal cord, or if it just moves in small areas.

Big Mike · 11-23-2009, 05:35 PM

I haven't heard anything about the phase 2 data report to be announced in Chicago. Wasn't that supposed to have happened by now?

xsparklingwinex · 11-29-2009, 01:30 PM

What is killing the motor neurons? Having an injection done for so much money.. who's to say what killed them the first time.. won't kill them again? It's kind of like continuing to fill a cracked glass with water no?

I am sorry if it sounds harsh. I am all for the hope of a cure and belief they will find one.. but people who provide a false sense of hope to people desperate for an intervention of some kind for a large amount of money.. bother me.. As giving a hopeful person false hope.. can lead to a disappointment.. and I don't believe anyone is deserving of that..

I say this after thousands of dollars being spent on having mercury fillings removed.

Blubear · 11-30-2009, 03:34 PM

I wouldn't necessarily call this false hope. It's education. If there is a cure or a better way to deal with this beast of a disease, it will most likely come via stem cell research and we have to start somewhere. The biggest problem for most of us is the lack of time. I am really really grateful that someone in this forum has gotten this treatment so we can watch, study and hope for some positive results.
Hugs,
Blubear

GlenBrittle · 11-30-2009, 05:30 PM

Sparkly , many of feel exactly that way. Yes, its harsh , but sometimes you just have to call a spade a spade.

Blubear , time and money are the shortages for most of us.

BethU · 11-30-2009, 09:02 PM

On the other hand, if you keep refilling a cracked glass with water, it's still full. Presumably, if the stem cells worked, they could keep injecting as long as you have the money, and arrest the process.

As to cost: If it works, there would be a lot more customers (patients) and the cost would drop.

I'm with BluBear ... if people try experimental things, I want to know their experiences and the outcome. Having actual information about these procedures rather than just rumors at least gives us something solid to evaluate.

sparklingwine ... that's solid information, that removing your fillings didn't cure your ALS. I had my amalgams removed 25 years ago to be replaced by porcelain crowns, and got ALS anyway. So that's another piece of information about ALS and mercury. If you HADN'T replaced them, would you always have the nagging feeling that you hadn't tried everything to stop ALS? We may have unrealistic expectations about the outcomes, but hope is hope.

Big Mike · 12-01-2009, 01:47 AM

The stem cells being developed today are a lot more sophisticated. They are designed to help neurons survive long periods of time due to secretion of neurotrophic factors. There is no guarantee the new cells will be killed off by the disease, and even if they are, they may survive long periods of time as neurons don't die suddenly. But they are being developed by real companies like Brainstorm and Neuralstem. I am rather skeptical of Monterrey.

Doris Little · 12-08-2009, 12:05 AM

As much as some people are negative on this site, mainly Al, I think if you feel this was worth a try you should of done it. Everyone to there own.
I hope it works and Al will stop being so negative towards any treatment anyone wants to try.
Good luck and keep us posted.

GlenBrittle · 12-08-2009, 05:16 AM

Doris,

I look at Al's work with a different spin.

While I agree with you that everyone should make up their own minds, I also agree with Al and his viewpoints on the subject.

Too many people , in shock from a recent dx , show up looking for the miracle cure , and are desperate. These are they people that need to be warned that these outrageous fees only buy hope, not a positive cure. Most of these same people will spend their last dime only to be let down.

If you have the money to spend frivolously, then have fun. Most of us do not have that luxury, and need to plan to make the best use of our dollars.

Glen

Doris Little · 12-08-2009, 05:30 AM

Glen I understand that Al is trying to be helpful. I personally myself do want to try any of the so called cures in Mexico or China because like you I am very skeptical and do not have endless dollars spend on false hope. Thanks for your reply

Big Mike · 12-08-2009, 04:04 PM

The problem with Monterrey is that there is no real data to back up what they're claiming the stem cell treatment is supposed to do or how effective it is. They had one report on a phase I study and that's it. Now they're charging fees to patients when they're still supposed to be in the clinical testing phase. Those are red flags for me.

clippedwings · 12-17-2009, 04:01 PM

I went to great length to post all the "base science" currently being used as a foundation for the stem cell clinical trial in Monterrey on PLM in the Monterrey stem cell thread. Everything is there from CD133+ to MRI tractography. I wouldn't mind duplicating all the information here, but web links drive this forum format bonkers. I also posted the results of phase 1, which are quite detailed. Being a technical sort, I was impressed by the level of detail. I actually enjoy the research challenge, because I find independent research that seems to confirm Tec is on a logical path.

We are all must get used to the idea of cost recovery in clinical trials since the FDA authorized this concept in the US on August 15, 2009. If you don't pay, your insurance will, and of course the cost is routed back to all of us. Also remember that the cost is variable and the 18K is far less than what the surgery actually costs. Now compare the 18K to a 20K AAC device or a (no joke) $30,000 PWC? A 30K PWC is certainly a clear case of medicare fraud. But we don't say anything about this, do we?

At the Radiology Conference in Chicago last month, Hospital San Jose published information about MRI tractography as a biomarker for ALS. I have a copy of the poster in the form of a 2.8mb jpg file. Send e-mail by PM if interested. Phase 2 results are at the publisher and are scheduled for the March issue.

I continue to have no progression, maintaining FRS of 24 and weight of 126. Still cycling a 7.5 mile hill course to condition my leg and trunk muscles, cardiovascular system, and stimulate production of brain derived neurotrophic factors (BDNF). Still short of the three month point, I cannot see any sustained effect of the procedure above the noise floor. I am cautious of "manufacturing" a positive effect, and therefore will rely on the assessment of my wife as well as weight gain and FRS increase. I do have emerging positive indications, but will not elaborate until these indications become sustained.

The science is indeed there. I'll explain and backup with scientific studies, but I urge anyone with a curiosity to visit the relevant thread on PLM.

On other fronts, keep an eye on BrainStorm Cell Therapeutics. This company has wisely chosen to push forward with stem cell trials next year in Israel to escape FDA bureaucracy.

clippedwings · 12-17-2009, 07:54 PM

Here is the link to the MRI Tractography poster at the recent Radiology Conference.

http://www.alsworldwide.org/images/c...oalta2_000.jpg

Shane the Pain · 01-12-2010, 02:34 PM

Hi Ya'll,

Ok whats the plural of ya'll ? Answer: All Ya'll !

So here is my latest follow up:

Good

energy level is good
attitude is good
I can still drink coffee in the morning
I can lay on my side longer
I feel my rate of decline has slowed
Given the choice, I would do it again

Bad

Having trouble swallowing
choking more
legs have gotten worse
more trouble transferring
use V PAP more than ever

The following is my 15 min of fame reduced to 4.5

Terminally Ill S.D. Man Looks For An Answer In Stem Cells | KPBS.org

Please feel free to ask questions, please note that I am slow with responses.

Your friend
Shane