AMN family! After searching and searching like most all of us have been for sometime! Well last Wednesday I had a Stem Cell treatment done and yesterday and today I feel just great! I know that I will have TONS of work ahead of me and this is NO CURE! But, I am feeling great, with less pain and my knees are able to move a lot more than they were able to a week ago. I can walk much better and my stability is getting better also!
Just wanted to let everyone know I may have found some hope!
Where was it done please ?
Yes, more info please!
What can I tell you Julie?!??
Thanks for that. I will be keen to see how long the affect lasts ages for your sake Was there any massage involved
Glad to hear about cost side of things and as you know this is an area open to scams. I would keep written documentation of the entire process and daily onwards so you have some data
Details, please? What led you to Mexico for this procedure? How often did you meet with the doctors, and what expectations did they give you about this treatment? What was the cost like?
Great questions, Aaron! mvruggink Just having no clue how you got there, what your process was, did you need to qualify for this? how long are the benefits supposed to last? side effects? I'll have a look at the video monkeybus posted as well but is this the route you went?
that's great! as you can see we all have questions haha obviously.
I'm only a couple hours from the border. There was a company I looked at awhile back I'm Mexico but wasnt sold on it. there wasnt enough info then.
that's great news about no pain.
I looked into this a while back after seeing about it here:
This doctor does it in Panama, I believe. I emailed him, I forget the cost he quoted me, something like $20,000. This would be a small price to pay (if it worked).
Have a look at the vid. He describes the different types of stem cells, all makes sense. Has been a while since I watched, but he does talk about one type of stem cell that guarantees cancer.
We are in Dallas Buyers' Club territory, going south of the border. A lot of clinics in China offer stem cell therapy as well.
The video link doesn’t work. Come on Monkeybus, we expect better than that from a veteran like you. 😄
Fixed it. Let me offer my sincerest apologies to one and all.
Quite an entertaining video. Has Mel Gibson in it as well. Plainly, he's still trying to rehabilitate his public image.
Monkeybus. I did call this stem cell place and they would not take me as a patient.
Mvruggink
Ahh, see, I filled out their questionnaire, and they accepted me. I didn't mention AMN.
I am half-way tempted to mail them again, forgot all about it really. This whole, "If it worked, everybody would be doing it" thing. Though, maybe this is the vanguard.
There you go, if anyone is interested, and I expect you are.
Here is the email they sent me:
Physicians’ Treatment Protocol Recommendation
· 120 million expanded allogeneic mesenchymal stem cells (intravenous administration)
· 10 million expanded allogeneic mesenchymal stem cells (intramuscular administration)
· Treatment length 4 days
Pricing
· $24,050 US Dollars
· Pricing valid 90 days from receipt of this email
· Includes:
o Treatment-related medical services and facilities
o Treatment-related laboratory services
o Complimentary 5 night stay at Hilton Panama (standard room) with daily breakfast and Wi-Fi (for 2 adults)
o Complimentary VIP airport gate arrival service (for 2 adults)
o Complimentary Airport and treatment-related transportation service (for 2 adults)
In order to receive final approval for treatment we will need you to send in the following information for review:
1. Confirmation of Diagnosis (i.e. Letter from your physician on letterhead with signature/stamp or prescription with the same information or copies of medical records stating your diagnosis)
Please fax to +1 866-755-3951 or email to karen@cellmedicine.com
Monkeybus,
Why wouldn't you specify that you have AMN? That is the reason they accepted you. I paid around 7500 for the entire trip to Mexico, and they knew exactly what we all have AMN.
As I recall, there was no option on the questionnaire. They replied based on the symptoms I specified.
Doesn't really matter, I think. They do for MS, and I was concerned about spasticity and neuropathy. It would take gene therapy to "cure" us, but I am prepared to believe stem cells could, could repair myelin/axons and enable us to walk better, not feel pain.
Wow brain lesions went away! That's nuts
Where did you hear about brain lesions Going away.
I can’t remember but it I think it was on the video link posted
I assume it's not well used in the US as the research on possible after effects hasn't been done? Glad you are feeling well, hope it stays with you!
That’s great news! Where did you have the stem cell treatment done?
Mexico!
Folks, I have thought about posting something like this before.
See my comment above with the URL of the stem cell clinic in Panama, plus the video.
Who do you trust, the FDA, or an MMA fighter/comedian/podcaster and a doctor who operates out of Panama for legal reasons?
You all know my views on AMN and the current state of medical avenues for us. I'll quickly adumbrate them:
Baclofen, Tizanidine, Clonazepam.
That's the first-line treatments, then you got:
Modafinil, Gabapentin, Lyrica, Ampyra, 4-AP.
If you can find a doctor who'll prescribe, and, and this is important, and if you can pay (either yourself, or your insurance).
We all know this. But I have thought before about we run a Gofundme campaign to raise the $24K and send one of us to Panama to be the guinea pig.
I'l volunteer to go, I'll video the entire thing, post it all up on YouTube, etc. Course, anyone else is welcome. As long as one of us goes.
Just a matter of raising the cash. Plenty of us AMN types, and plenty more ALD kids. Could be easy to harvest that money.
A group effort, we can elect a small committee to oversee it, make sure nobody spirits away the money, etc. Go to Vegas with it, could have a great weekend with 24K to spend.
What you think, folks?
Monkeybus,
They will not accept any of us to treat, I have spoken with them on the phone and tried to get them to accept me as a patient. 24,000 bucks I have it and can spend right now from my own gofundme page. Currently, I have 11,000 US dollars in there and my neighbor has told me he has 12,000 that he is going to give me! I do not understand why you are trying to get the group of us to "try" and to this clinic if they will not accept our condition... In the past year, I have exhausted all avenues to try and find the place that could give me the most hope, and I have found the place in Mexico. That is the reason for this post!
OK, let's not argue over this. They offered to treat my symptoms is all. The clinic is public about what they do, all information is freely accessible to all.
We still do not know the name/address of the clinic you went to. Who is the doctor, what kind of stem cells did you have implanted, what was the procedure, et al?
Can you let us all know in more depth?
Thanks.
Damn Monkeybus, why all the negative energy? One of our fellow AMN guys tries something not blessed by the FDA, and you shit all over it?
You don't even ask how he's improved or ask about his pain level, and you mock it like going to Vegas? When you share with the group about things that help you, do you get the same treatment?
Speaking of Trusting the FDA, have you watched the Bleeding Edge?
All these people 'trusted the FDA' and wished they didn't.
I'd take my chances with an MMA fighter. 
I live in Australia and I do not believe that stem cell treatment is available here. Where did you get this done? I have AMN.
Can you please keep us posted on how you feel, what you notice? Thanks!
Hey Catherine,
I will absolutely keep everyone updated! It has been two weeks since I had the treatment done! I am feeling great, walking up the stairs without any assistance. Before, I would have to use the handrail. So my balance is doing better! But this is going to be a work in progress with working out and strengthening my weak muscles. I also believe that it is not going to be a major change overnight. The stem cells are working and I will have to work on my strength as well. Feel free to send me a message if you would like to speak over the phone!
A good friend of mine had stem cell treatment on his knee in Columbus, Ohio with amazing results. Why Mexico? Why Panama?
Watch the YouTube video Monkeybus posted in the thread or google it. That will give you the best explanation 😃
I’m glad to hear you are doing well. If I might ask what is your medicine regimen like now?
I have not changed any of the medications I was and am taking. This is going to be a very slow progression and will continue to work over time.
Thanks for replying
If anyone would like to get more information from the clinic themselves I will post their info below. Tell them I sent you so they will know which treatment I did, my username is my last name.
619-735-9581 USA
rmistemcells@gmail.com
Just wanted to give everyone a little update on my progress a little over 2 months since the stem cell treatment.
I have been feeling good every day, still dealing with pain but my walking seems to be doing much better. Working on my balance every day, going up and down the stairs. I have gained about 20 lbs since the treatment. I weighed 118 lbs. I a 5' 11" skinny build. so gaining some weight was VERY MUCH needed! I am feeling good though every day not as tired as I was before the treatment. I will be going back to Mexico for another Immune Modulator treatment in a month or so, depending on my schedule.
The doctor has been keeping in touch with me to see how I am feeling every few weeks. He is hoping for more results after another immune treatment. I have spoken with him about coming back at the beginning of 2019 for another Stem Cell treatment as well.
There have also been a few other gentlemen that I have been in contact with that also have AMN and they have also. They decided to make the trip also to Mexico for this treatment too! I believe they both have access to this forum, so if they would like to post some updates themselves they can
I really want to help as many people as I can with finding out about this new treatment, that only 3 of us now have had. I believe it is helping me at 30 years old and my hope is that this will help younger boys/men not get to the point some of us are.. Please feel free to contact me and I would love to share everything about this with anyone!
mvruggink I know this post is old but how did the stem cell end up? Would you still recommend? Thanks
mvruggink Any updates? I haven't seen anyone describe how long stem cell is effective for.
So where did u go to get this done?
this is the gold standard. Check out his book, stem cell therapy, rising Tide. There’s also a really good interview with him and Mel Gibson on the Joe Rogan show.
How can I help my student with leoukodystrophy?
Has any female with AMN had kidney problems? I was diagnosed with end stage renal failure early this year. Came out of nowhere.
Adrenomyeloneuropathy - does anyone have any info of specialists in the north west of the uk??tizanidine vs baclofen
Trying TUDCA again
