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kaumy2

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Jan 22, 2014
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Loved one DX
Diagnosis
8/2013
Country
US
State
WA
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Port Angeles
Has anyone had any stem cell treatment for ALS from Beijing Tiantan Puhua Hospital or the Cells Center China in Beijing? I saw that they had a stem cell trial listed in Clinical Trials. gov so I wondered how legit they are. I would like to know more about it and how successful the treatments were.
 
I am going to WU MEDICAL CENTER in Beijing may 14 - June 4 . from everything I have researched and it's been a ton of research trust me. wu medical and puhua the place your talking about are thee most reputable and best pplaces to go for stem cell treatment in China. I chose wu medical because they get the exact same cells used in the current Emory university drug trial. neural stem cells from spinal cord of a 8-12 week old fetus and come from the same place Neuralstem. I'll report back how it goes when I return.
 
If you guys actually go thru with this procedure I wish you nothing but the best..........but remember these off shore stem cell operations have never cured anybody, we would have heard about it. They would be world famous. They are appealing to your desperation.

Once again I wish you nothing but the best with your treatment.
 
jees seriously nobody is thinking were gonna get cured lol lol. I'm going to see if it slows progression and gain some strength back . it's not curing anyone it just improves quality of life. the drug trials going on now aren't curing its just helping some people. that's why it's called stem cell treatment not stem cell cure. why would u think we would think by going to China we would be getting cured? it's called trying anything possible that may help prolong your life. sitting around doing nothing does absolutely no good
 
Once again I wish you nothing but the best with your treatment.


Don't get me wrong here........I DO sincerely hope that this treatment will help you.

I wish you nothing but the best on your trip
 
I know you mean well and appreciate it. I was just letting you know Ikknow exactly what im getting into. im just hoping it helps in a great way but I don't have high expectations im being realistic
 
I have read the United States is no longer the world leader in medical research and development. Many people here travel to Europe for treatment unavailable here (such as Parkinson's Disease). Our research and development is handcuffed by religion, religion funded politics and politicians dangling from their strings. I believe Australia or Germany was first to accredit "Split Hand Syndrome" as an early indicator of ALS. Unfortunately, at this time, giving foreign doctors a chance (credit) is for those who can afford it. But, any success they can report and document back here may someday change some stubborn minds.
 
I can totally see why km2149 is willing to give this a try. It is frustrating to have so few options here in the US, and although there is certainly no promise of improvement and also great risk involved, if we sit around and wait there is a CERTAIN promise of no improvement.

I just wish the US could speed up the trial process and let those of us who are willing to assume the risks do so. At the least there would be more data for the researchers to evaluate.
 
the criteria to participate in drug trials MUST change.....I can walk, talk, eat, and breath on my own but denied participation because I am long past present criteria rules...drug trials are delayed because of lack of volunteers....if they do find a drug that looks promising will it work for older PALS, or we just spend the money and take our chances...
 
>I am going to WU MEDICAL CENTER in Beijing may 14 - June 4

Good luck!

Are these to be IPS stem cells? Embryonic? in spinal cord or in spinal fluid?

Max
 
We desperately need good biomarkers so we can really tell what works. As long as they have to use things like the functional rating scale and fvc to measure effectiveness it is going to be hard. Even excluding slow progressors ( which is the reason given to exclude people like pearshoot) it is very inexact.
I was told they had hopes of a protein in spinal fluid being useful. If you are asked to do biomarker studies ( spinal tap,blood ,mri) please consider it if you are able. Imagine if they could figure out what works by a blood test the way they can monitor a diabetic!
OP sorry for the hijack. Wishing you good luck in China!
 
hi Nikki -- you might look up Dr. David Beers and/or the FoxP3 marker. Also, check out the FB PALS forum, look for Tricket, a Famial PALS ...
 
Thanks Max. I know Trickett and I am in the PALS group. I have done biomarkers for 3 studies, 2 are ongoing. Being FALS I think it is easier for me to take the long view as I am fighting for the next generation. I think the protein NIH was talking about is another one. They are sending samples first to Hopkins and Barrow. Hope one of them pans out. Someone also said they thought the AIMS study ( blood looking at lymphocytes) that I do at MGH was yielding good data. That would be even better as it does not involve a spinal tap.
 
I can totally see why km2149 is willing to give this a try. It is frustrating to have so few options here in the US, and although there is certainly no promise of improvement and also great risk involved, if we sit around and wait there is a CERTAIN promise of no improvement.

I just wish the US could speed up the trial process and let those of us who are willing to assume the risks do so. At the least there would be more data for the researchers to evaluate.

it would open the option to choose to those who might not have the opportunity otherwise because of travel or expense!
 
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