Dear ALS Friends,

I have not been on this site in a while. I have gone down a few plateaus since my last posting. I thought it time to tell you that my wife and I decided, after much research, to make the trip to Monterrey, Mexico and get the stem cell injections here. The procedure is being done at the University Hospital in Monterrey. The city is clean and safe. They take stem cells from your own body and then inject them into your brain. We met one American patient here, who had just completed her procedure and she was doing very well. I also spoke to the mother of another patient who had the procedure nearly two months ago, and she told me that her daughter felt like her progression had stopped. If you are interested in finding out more information about this procedure, please contact Stephen Byer at alsworldwide.org.

I am having my injections done this Thursday, and will be home on Saturday.

Wish me well......Best to all of you,

Shane

Shane ... praying that all goes well with you, and the procedure is a success !! Please let us know the outcome.

Fingers crossed.

Shane, I hate to rain on your parade but let me know how well you are in 3-4 months time.

AL.

Shane,

Best of Luck!!!!!!!!

Good luck wth procedure Shane.
Keep us posted, Cookie
P.S. Have anyone heard of the Stem Cell clinic in Germany?

Yes cookie...I have been approved for it...well that is novel, all they want is my money.. We have a friend with limb onset, now 5 years...is totally immobile. He went to one of the german clinics (they have a couple...stutgart and cologne.)...he had the treatment 3 months ago....they said 3 to 6 months before he should notice a difference. So far his family have said he is worse. I saw my speech therapist today who also sees him and she said there is no change in him, she did not even know he had gone. She also has a patient who went to India, again, no improvement. She did point out, that in the UK for sure, if they really thought it would work, they would ethically be bound to give it to patients here. Top London Hospitals and universities and the MND assoc are researching the treatment and they think it is at least 5 years away. The treatment produces some new neurons but they cannot connect with the muscles....that is the hurdle they are trying to overcome as well as how to make the neurons grow more quickly and more abundantly. I am approved but wont be going YET.....

Shane,

It's good to hear from you again. Keep us posted on how things go post treatment.

Zaphoon

I wish you the best Shane. But please remember that it will take many months after the treatment before you can say whether or not it has truly worked. Please keep us informed, and again, all the best.

i hope with all my being it works for you

I hope the best for you.....I am praying for all here.
netty

Hey Netty, how you doing. Glad you still look in.

AL.

Cookie,
We took my mom to Cologne in Dec 2008 just weeks after her diagnosis.

She passed away just three months later. I am of the opinion they need to remove ALS from the list of diseases they treat.

They haven't updated their website since treating only 53 patients in May 2008. I don't doubt the treatment holds hope for other diseases, but not for ALS. Notice the success stories are all for other diseases.

Dear ALS Friends,


I had the surgery on Thursday and was discharged on Friday.
We leave tomorrow to fly back home. The experience was quite positive and while I have no drastic impact yet, I am quite hopeful that this procedure will in fact help. We have spoken to a few Americans who have also had the procedure. They are also happy they did so. I recommend that you look into it for yourself. Please feel free to ask any questions you may have....even you Big Al......

Shane

Congratulations Shane. Hope you see a drastic improvement day by day.
Have a safe trip back home,Cookie

Hi, Shane ... glad it went well, and still have fingers crossed that it will do as promised!

Would you mind telling us how much it cost (aside from travel, lodging, etc.)?

Also, what was the procedure like? You say it's surgery: where do they cut and how do they inject the stem cells? Do they have to suppress the immune system?

Thanks for keeping us in the loop.

Hello Shane

I am wishing for the best possible outcome for you. You're in my thoughts, take care.

Hi Shane, Thanks for sharing with us ,I pray it works for you , your positive outlook will help you .

Please keep us updated to anything like side effects, pain, etc. The more information the better. Do you know exactly where it was injected and how much? Number of stem cells? What were they from? Animal? Details, if you do not mind.

Hi Beth and fellow ALS friends,

When you go there, you go there for at least a week. On Monday morning you meet the team that came up with this protocol. Most of the doctors had their training in the United States. That Monday morning for me there were five doctors in the room, and they explained to me in English exactly what was going to happen. They took the time to look me in the eyes and answer my questions and concerns. Try getting five doctors in a room to speak to you alone in the United States!

Monday had first Nupragen(sp?) shot. Did not have to check into the hospital. Later that day I went and had a brain MRI that will be used in the surgery.

Tuesday - I returned in the morning for second Nupragen shot. After the shot the hospital asked me to do an interview for their dvd. I would also like to note that when I was there that morning a swine flu patient was checked in the ER and they quickly got me out of there and put me in the pediatric ward.

Wednesday - I returned in the morning for the third shot of Nupragen. Later, around 4:00 that afternoon, I had to check into the hospital to have a catheter placed in my chest. For me that took a while. I had dinner that night and was told no food or water after midnight.

Thursday - In the morning they came and filtered my blood via the catheter. They filtered out the exact stem cells (again I forget exactly but I think it was CD-133s) that they believe are the stem cells that become motor neurons. Later that day I had a spinal tap and was told the fluid was used in the injection with the stem cells. By 3:30 in the afternoon the extremely sophisticated operating room was ready as well as my injections. They used local anesthetic and light sedation during the surgery. With use of the MRI, they located the exact positions to inject the stem cells into my cerebral frontal cortex. The surgery took about 3 hours before I was awake again. After one hour in post-op I went back to my room and had dinner.

Friday - As expected my head hurt. The injection sites were painful for three or four days (still a little painful today).

To the best of my knowledge this is the most beneficial treatment available to ALS patients to date. I would strongly encourage you to do your own research and to speak to others that have had the procedure. This protocol has given me hope.

Monterrey, Mexico is a modern, safe, clean city.

I cannot type for myself, so you are welcome to post your questions, but realize it may take me a while to respond.

All the best.

-Shane

Wow, Shane ... THANKS !! That is a very complete description of the procedure and answers a zillion questions.

Now the waiting begins. Did they tell you when you might start to see changes? If the procedure works, will it be a treatment ... i.e., slowing down progression or stabilizing it ... or a cure?

I really appreciate your sharing this with us.

Shane, thanks for the information. There are still some questions that you may not have the answer to:
How many stem cells did they inject?
Did they drill a hole in your skull to inject them?
How did they close up that hole so fluid would not leak out?
What was the name of the clinic?
If you do not mind, How much did the whole procedure cost?

Thanks for the info. Most people who have had this done just say oh I went to China and they did it, cost $40,000, and we never hear from them again.

Shane, I'd like to echo Beth's comments on how well you have described this procedure.

Beth, congratulations on reaching a new apex - "Extremely" helpful member. Now we know what happens at the 2,000 post mark! You are a true pioneer! Now I have a new goal! Why hang around veing a "Very" helpful member when one can attain the celebrated status of "Extremely" helpful!

I'm going for it!

Shane, back to you... A true pioneer!

I hope this procedure does something remarkable for you!

Zaphoon

I hope it brings good results. I have always heard that it would take about 3 years for the stem cells to grow to the length of the dead neurons so I will be waiting for reports in 6 month increments. I hope it works!

Hi All Thanks for all your interest I'll try and answer some questions. Stephen Byer is the American representative.

They inject perhaps as many as 15 million stem cells into both sides of your frontal cerebral cortex and i believe it was two holes per side. Then they stitched up both sites. They ask for an $ 18,000 donation. This does not include travel and accommodations. They tell you that it would take up to three months before you notice a difference. My goal was to stop my progression and improve my function.They have also advised me to be very active with: speech, physical and respiratory therapy. Again, it is my belief that this procedure currently holds the most
promise and hope. This is not a cure, but a very promising beginning.

i am afraid to hope

OK Shane I hope it works but being the Devil's Advocate here, the $18 K "donation" makes me wonder. If you couldn't "donate" that much would they still treat you? Donation seems to be a fancy way of avoiding litigation. Most of the doctors had their training in the US but were they ever licensed there? I've read some not so flattering things about Stephen Byer. But then some have said some unflattering things about me too. But then I didn't ask for an $18,000 donation.

AL.

Al you as usual are right one the money $$$. (pun intended)

tdamess, my hope is that science and research will find a cause, treatment, and a cure. I understand you were probably speaking of the stem cell injections not holding much hope.

I just wanted to explain my signature, I have used for some time now, We must keep hope alive, for that cure, treatment, test, every little step in the progress against the evil ALS.

i am afraid to hope it works and being let down i want it to work so bad

I am new to this forum, but I just wanted to share that my sister was the first international patient to participate in the stem cell study in Monterrey. She received transplant in June 2009 and has not "lost" skills. She has submitted reports to ALS Worldwide every two weeks and continues to report to the researchers and physicians at the Tec de Monterrey. In the documents, she indicates that she has had no side effects. At this point (almost three months post transplant), she notices "increased stamina." She will return to Monterrey in early December for another MRI to objetively determine if the transplant let to increased neuronal growth. I will continue to speak very highly of ALS Worldwide as well as Stephen and Barbara Byer. I will try to remember to check on this form. . . I, too, am happy to answer questions although Shane did an excellent job (above). Take care.

Being the skeptic that I am, I am always suspicious of a first time poster who jumps on an unproven, expensive treatment in foreign countries.Your profile says you or your sister? was diagnosed in 2007. What has the progression been like. Who did the diagnosis? Most people feel better for about 3-5 months and then go downhill. I wouldn't be singing any praises yet. Did they ask for another "donation" for Dec.? Sorry if I sound harsh but I had a friend who was ripped off by creeps like this last year in Mexico. He died last month.

AL.

About the only thing going away (Not ALS) is people's money.
There are studies of work with stem cells all over the world; but not one has shown any positive results, YET. If they cannot regenerate nerve cells in a rat, how can anyone claim to do it in a human.
Oh, I just love the term DONATION for the treatment. That I guess is so you cannot sue them if you develop tumors from the injections and die.
I always cling to HOPE, but false hope is not good for anyone. It just crushes your soul when you find the end results.
I hope and pray for a treatment, cure, anything, but so far you might as well eat Aluminum foil, it will do you just as much good.

Dear Shane:

Praying for a great recovery and good prognosis!

Patty :-P[/I]

tgraue ...

I'm glad your sister is feeling better after the treatment, and hope this continues! Please keep us posted on how this goes. I really appreciate your and Shane's sharing your experiences with us. It is good to have a first-hand report on these things.

As to "donation" vs. "fee," if the laws in Mexico are similar to those in the US, the distinction is probably for tax purposes, not for "scamming" purposes.

Oh, so the creeps don't want to pay taxes on their ill gotten gains. Sounds like a real bunch of humanitarians to me. Now I'm really suspicious.

AL.

I don't mean to burst anyone's bubble, but there is no evidence that stem cell therapy works at this point. Stem cell research is a great hope for the future of neurological diseases, but right now, it's still in the early research stage. In order to know whether it works, doctors need to conduct lengthy blind controlled studies; otherwise, all we have are anecdotes from people we don't personally know. If you have $18k, take a really nice vacation and put the rest of the money in savings because you'll need it for various disability-related expenses.

Best of luck, and yes, let's hope that at some point in the future, stem cell research will produce a cure.

18K is cheap. My friend spent 30K and wouldn't say how much the second visit cost. Oh and did I mention he's gone? About 5 months after the second visit. Guess he won't be mentioned on their website.

AL.

Sorry, Capt Al, I really don't understand the anger toward someone trying unproven treatments.

Every one of us has a different path to follow and we make our decisions based on our own needs and value systems.

To some, having a vacation of a lifetime sounds great. To others, not so much. I think the people who are opting to try unproven treatments instead of trips to Disneyland are not stupid, or suckers, or ignorant. They are intelligent human beings fighting for their lives. Having people on the forum constantly tear them down, over and over and over again, with anger and sarcasm doesn't help anybody.

If someone benefits for three months from a particular treatment, feeling better and more energetic, I say hooray for them! That's about the same benefit you get from Rilutek, for about the same amount of money, except Rilutek doesn't make you feel better.

I really believe we should support each other on this forum, and accept the fact that not everybody is going to make the kind of decisions we all approve of. It's fine to express your disapproval once or twice, but then ... can we just let it go? Wish the PALS well and hope s/he finds some benefits. They are doing us all a service by sharing their experiences with us!!

As to "real hope" vs. "false hope": The hope that they will find a cure for ALS "someday" is not really a hope. It is a certainty that they will. It is also a certainty that it will be way too late for most of us. The hope that a treatment will work is not "false." That's what hope is ... the feeling that a desired outcome may come about.

I agree with you Bethu.
We should be supporting people who, for whatever reason decide to try somthing out to improve their condition.
By all means point out some facts to them ie that it isnt yet proven to work or "joe blogs" had it done some time ago and it didnt improve them, but then support them in their decision.

Who on this site hasnt tried somthing to try and improve their life ie some different vitamins or natural products, i know i have.
Some dont do any thing and others do.
Someone has to be the first to find somthing that improves the quallity of life we have, and i, for one appreciate the reports that people put in re their "trials".

I know if it works (or any other treatment for that matter) it will go through the world like wild fire but it would also be nice to hear it on this site, perhaps even before it gets annonced.

cheers
Peter

i see both side's of what is being said , i respect al's view's and understand we all have to go our own path and , each side gives us some food for thought..... feelings of anger,sadness,depression, envy, and the... why's ...is all normal to have just some days are better than other's , and how new the newest loss is and sometimes thing's just come out the wrong way but, we all care what happens to each other .... so i thank you all for your thoughts no matter what and also for the bright side that thier are times i come in here so despeate,so down and helpeless and someone in here make me smile....thanks again people

I have to go with Beth on this one. As far as I am concerned the $950 spent on Rilutek everymonth by my insurance company is the same thing. That would be about 20 months worth. For 3-6 months of life? I don't take it because it will keep me alive for another 3 months. I take it because they can study me and gauge what it may do. The same reason I will go on the ceftrioxone test next month. I may get the placebo, I may get the real stuff. It may hel, it may not. But at least we will learn somehting from it. The length of my life is not what is important. The quality of my life and what I can do for myself and for others is what is important. I have always said it. If you need someone to try it on, well here I am. I need to be of some value. And, hopefully the next generation won't have to go through what we go through. So go out and try anything. That is the only way we will find that one thing that does help.
NancyS

i agree with what others have said, particularly BethU.... trying new unproven treatments is, to many people, a coping mechanism.

it seems so silly to say to a dying person "save your money -- buy a new car or visit a far-flung destination -- enjoy your life while you can" -- it doesn't matter what car you drive or where you visit in the world, ALS comes with you. there's no getting away from it. of course i wouldn't condone putting yourself into debt or remortgaging your house to try something unproven. but if you can afford to take the chance and you're an adventurous sort, then you shouldn't be faulted for trying.

That's how we felt when we took mom to Germany which was a lot less expensive than these Mexico treatments I'm reading about here. She had the money and was going SO fast that it was worth 10K to us on the one in a million chance it could even give her another week or make her feel even a little bit better in the little time she had left. We went into it with the attitude that it probably wasn't going to work and it gave her an opportunity to see another country before she died.

i'm sorry your mum went so quickly asantiago... i'm dreading the day this disease takes my mum.

In defense of Capt. Al: I didn't see where his anger was directed at the people trying stem cell therapy. It looks like he's angry at those who would take time and money from dying patients. These "doctors" are the worst kind of predators.

If somebody wants to try an experimental treatment they shouldn't be faulted. This can be a benefit to the PALS community at large. Those that participate in legitimate clinical trials are heroes and doing us all a favor.

Somebody trying stem cell therapy should base their decision on complete and honest data. The problem most often is that only the favorable results are reported. So we never get the complete story. The results are not published in scientific journals. I encourage anyone who tries stem cells to come back and tell us about their experiences good or bad. Too often this doesn't happen and we only hear of somebody off to China or somewhere about to try it, but rarely do we hear what happened. Thank you Shane for beginning this process in your case. I encourage you to keep us posted.

-Tom

I have retracted my statement that seems to have offended people.
I still stand by the facts as we have known them time and again here on the Forum. I wish this was not true, but there is currently no treatment, cure, etc. for ALS, that has proven to help, work or benefit anyone. There are several Medical Trials in progress that we all hope and pray will lead to a major break through.

If my over zealous attitude of trying to defend people from predatory practices has offended anyone, I apologize. I never meant to hurt anyone, destroy their HOPE, or cause you pain in any way shape or form. I only want the best for you, and wish you well in whatever method you chose to follow.
Please forgive me.

Dear ALS friends,

Thank you Beth ! Before I had decided to go to Mexico, I was deteriorating significantly, at a rate that was faster than previous. I was losing hope and thinking of dying. I have alot to live for; four beautiful children and a loving wife. But I was getting my ass kicked and couldn't take it.

So we found out about Mexico and one of my old neighbors, who happens to be a stem cell scientists and had worked on a ALS drug without success, was very involved in helping me decide to try this treatment. At the end it is was basically a better choice than sitting doing nothing and getting worse.

Dr. Hector Martinez is the head of this protocol procedure. He is a neurologist and had a very close friend die of ALS. It was his team that came up with the idea and how to implement it. They are also creating a foundation that would treat all ALS patients regardless of funds.

This procedure is not a cure and they are not promoting it as such. The best that I am hoping for is my progression stops and my function improves. Since my return I have noticed that fasciculations have returned after months of not having them. I am also clinging to the idea that my neck muscles are not getting weaker. I am hoping for more in the next few months and I will share what happens good or bad.

FDA.....We need to get them to approve patients that are willing to be guinea pigs the right to do so, given their diagnosis. I didn't want to go to Mexico. I wanted to be a patient of Neural Stem and have a procedure done here in the United States, something that will take another few years before a trial is approved.

I will end with this.....All we have is Hope. There is no such thing as false Hope, there is only Hope or there is no Hope. I Hope we learn something from this that eventually helps all of us.

All the best,

Shane

Shane, I hope it helps. God knows that it will be something someday and hopefully one of us will be the one that they find it helps. Hang in there and keep us informed.
NancyS

Hello all ALS friends,

It has been 6 weeks since my procedure. I want to try and help others. If you decide this is something you want to try, I want to try and provide helpful information. This is not a cure, however, I still support this procedure and it is my opinion that it potentially has the most benefit of anything else available. That doesn't mean I am correct.

As you may be aware, the positive things I can report can only be best understood by a fellow ALS patient.

The Positive:
Better attitude
A little stronger
A little more stamina
I can have coffee in the morning
I feel like I am stronger during transfers
I have gained weight


Not So Good:
I used to be able to text a month before leaving but it was getting worse. Now I might be able to send one text so no improvement and I've gotten worse.
I was supposed to be reducing my dependency on my breathing assistance machine, but have not done that.
I am still as dependent on others as I was before.

FYI: someone has to type for me, so give me time to respond.

Your Friend,

Shane the Pain

God Bless Shane, I pray that you will continue to improve.You are a brave man for doing this. Prayers for you & your family.
Sharon

still wishing you the best and thank you for informatation

Shane, thanks for the updates. I was thinking about you and wondering how you are doing.

I'd settle right now for more strength and stamina, such as you've received. I hope the other looked-for benefits kick in too, but it sounds like you've gotten some encouraging results so far.

thanks so much for the update, shane. i can only repeat what others have said and wish that you continue to see positive results.

my favorite quote of all time has to be, "the dumbest stem cell is smarter than the smartest neurobiologist" -- i wouldn't even question how it works, so long as it worked. please God.

I guess I would have to say that, for now anyways, I am skeptical of the Mexico treatment. Not because it's outside of the U.S. but because of the minimal amount of published reports associated with the treatment. Also, I do not see how injecting stem cells into the cerebral cortex helps the motor neurons in the spinal cord, which control the body's muscles. Damage in the brain from als is more associated with upper motor neuron damage, not lower motor neuron damage.

I hope I'm wrong. But regardless of the outcome of the treatment coming out of the Monterrey, it should not deter from the fact that legitimate stem cell research is being conducted, and soon to be tested, in the U.S. and other countries of the world.

About the only thing going away (Not ALS) is people's money.
There are studies of work with stem cells all over the world; but not one has shown any positive results, YET. If they cannot regenerate nerve cells in a rat, how can anyone claim to do it in a human.
Oh, I just love the term DONATION for the treatment. That I guess is so you cannot sue them if you develop tumors from the injections and die.
I always cling to HOPE, but false hope is not good for anyone. It just crushes your soul when you find the end results.
I hope and pray for a treatment, cure, anything, but so far you might as well eat Aluminum foil, it will do you just as much good.

The hope for current stem cell research right now is to provide nourishment and support for existing motor neurons, to help them survive longer, not necessarily to replace them. There have been some successful animal studies perfomed in accomplishing that goal, and we will find out over the course of the next couple of years how those successful thos treatments will be in humans.

Can I ask what the cost of doing this proceedure in Mexico is?

I believe the figure of an $18,000 donation for Monterray was mentioned. Tiajuana (sp) was $30,000. Way too much money for something that doesn't work yet.

AL.

Drat ... thought there was another update from Shane. Hope he's doing OK.

There are photos of the facilities (hotel and inside hospital room ... pretty posh) in Monterrey on the Patients Like Me forum. Three or four guys from various parts of the world are headed there, and are sending back reports on their experiences. That's a mighty small sample, plus Shane, but at least it is SOME actual hard information, rather than just out-of-hand dismissal or over-eager naivety.

So far, only one of them has had the treatment, just days ago.

Shane did mention $18,000, I believe, Al ... which doesn't include travel and hotel. Probably altogether, it would less than the cost of two years of Rilutek in the U.S. ($24,000)

I wonder how Shane is getting on...

If you or your CALS are reading, please lets us know how you are Shane! We hope only the best for you!

Hi all ALS friends,

Per your request I would like to try and share about how I am doing. Truth is the results are quite subjective at best, thus far. I guess the biggest thing I can tell you is that, at least in the short run, I feel that my progression has at worst slowed.

I think fellow ALS patients need to do their own research, find new procedures, try new drugs, do things out side the box, and share the info on wonderful forums like this one. So get out there and be a guinea pig and report your data !

your friend Shane

Thanks Shane for the update

I wish you well and indeed any other PALS who undertake such treatment for our condition.
As you said people need to be guinea pigs with trials, procedures etc.
Who knows someone might just find the "cure" we are looking for.

cheers and good luck
Peter

thanks it is still not a long time from treatment hope things keep slowling....best of luck

Shane... thanks for this update.

Do you -- or would you consider? -- charting your progress (or lack thereof hopefully!) on the Patientslikeme site?

A bunch of Monterrey people are already doing so. You may like to check out http://www.patientslikeme.com/forum/show/53541

dont know if anyone knows of this so just in case

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Phone: 301-314-2671 Fax: 301-405-1



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NeuralStem Inc. Receives FDA Approval to Commence First ALS Stem Cell Trial 9/21/2009

Hi Shane,

thanks for sharing your information on Monterrey. I am one of the people on PLM who are going to Monterrey as well.
We based our decision on knowledge, not on hope. We are environmental and mechanical engineers, a pilot, an accountant and several self employed people. Being used to analyse and interpret data we believe this phase III trial is the only usefull trial on the world when stemcells are considered. We will share our experiences also on our own site. All details on this will be put on PLM.
We also found some adverse reactions on our story. That's very understandable. There's a lot of bad experience in stemcells and a lot of pALS don't have the recources to investigate and fund. Since we are in the lucky position that we can do these things we decided to put everything we find online for others to read.

We were in the stemcellsummit in Baltimore (at our own expense, not sponsored) two weeks ago. It was very useful. We learned a lot and we got a lot of attention from scientists and the FDA. They want to learn from our experience to speed up their own work. Maybe you'll let us include your experiences in this. We think it can be very beneficial for all pALS if the FDA speeds up procedures in which they are flooded because of president Obama lifting the ban.
Also we met a lovely lady who was in Monterrey probably about the same time you were there.
Everybody can acces what we write on the plm forum. We will continue to put up stuff there.

thanks, Hans, The Netherlands

Can anyone provide the web address for the interactive computer game(?) for kids that the Canadian ALS association produced?

Thanks

Shane

Shane, not sure if this is what you are talking about but try this

http://www.als411.ca/

Limousine, nice, but go play somewhere else.

U4 real limo??? Get a life! Hopefully w/o ALS!!!

I have deleted all his non-als related posts. Cannot figure this person out...

Hi Barry,

Thank you very much that was the address I was looking for.

Shane

Shane did a wonderful job, but I would like to add a few important points. Tecnologico de Monterrey School of Medicine is no "clinic". Tec is the largest medical school in Mexico, affiliated with several American universities and Johns Hopkins.

The CD133+ stem cell count is five million in each side of the frontal cortex to address the upper motor neuron issue. An additional procedure due early next year will introduce CD133+ cells to the spinal area to bolster the lower motor neurons.

This is an ongoing clinical trial which started in 2005. Phase 1 data was published in February 2009. Phase 2 data will be presented in Chicago next month. You will not find any for profit clinic publishing any data.

I am part of the group that Hans mentioned that has been studying the stem cell situation for several months. I am the pilot of the bunch, and my procedure was performed on October 8th. We looked at Xcell and Nepsis, but there were too many red flags. My data is on the PLM site under "clippedwings". Rehab takes most of every day, so I have cut my computer time considerably. I am happy to answer relevant questions, but be patient as my rehab program must take precedence.

John

Welcome Wings,
Love that, you were a Pilot and came up with that witty screen nam, how cool. My son who is(14) loves the idea of being a Pilot. It is so cool how we come from so many different places and paths. Thanks for the info, we are glad you shared with us, keep us updated as you can, we are pulling for you..

Shane did a wonderful job, but I would like to add a few important points. Tecnologico de Monterrey School of Medicine is no "clinic". Tec is the largest medical school in Mexico, affiliated with several American universities and Johns Hopkins.

The CD133+ stem cell count is five million in each side of the frontal cortex to address the upper motor neuron issue. An additional procedure due early next year will introduce CD133+ cells to the spinal area to bolster the lower motor neurons.
This is an ongoing clinical trial which started in 2005. Phase 1 data was published in February 2009. Phase 2 data will be presented in Chicago next month. You will not find any for profit clinic publishing any data.

I am part of the group that Hans mentioned that has been studying the stem cell situation for several months. I am the pilot of the bunch, and my procedure was performed on October 8th. We looked at Xcell and Nepsis, but there were too many red flags. My data is on the PLM site under "clippedwings". Rehab takes most of every day, so I have cut my computer time considerably. I am happy to answer relevant questions, but be patient as my rehab program must take precedence.

John

I was wondering why the stem cells were injected in the frontal cortex (specifically, the motor cortex I would hope). That addresses the upper motor neuron damage engendered by als (if the treatment indeed helps). It's strange that, although some of us like myself have UMN dominant variant of the disease, why they didn't start with the spine first, as most patients have the LMN dominant or classical form of ALS.

Mike, I am in the dark about their reasons for working in the frontal motor cortex first, but by spring they will be covering all the bases. When I return to Monterrey next October, along with a repeat of the brain procedure, I will have the spinal cord procedure. Perhaps some additional answers will come with the presentation of phase 2 data in Chicago. We are told that MRI tractography is picking up a substantial increase in axonal growth in previous patients. Like Shane, I was in awe of the number of neurology doctors present at the initial briefing. All were smiling, with an extremely positive attitude. Their confidence level is very high. You don't see that positive attitude here in the United States.

John

John, thanks for posting on the Forum, too. I've tried to follow developments on PLM, but miss installments. You all are giving us our first first-hand look at new technologies from the patients point of view, and it's invaluable.