Monterrey, Mexico.....New Hope

[Shane the Pain]

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

[t34gib]

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

[Shane the Pain]

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

[sharona]

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

[tdamess]

still wishing you the best and thank you for informatation

[BethU]

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.

[rocmg]

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.

[Big Mike]

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.

[Big Mike]

Originally Posted by MtPockets

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.

[serenade]

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

[Al]

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.

[BethU]

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)

[rocmg]

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!

[Shane the Pain]

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

[peter57]

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