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valoree

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Joined
Jul 13, 2011
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15
Diagnosis
06/2011
Country
US
State
WA
City
Edmonds
I know this subject has been discussed in the past, but not recently. The most recent thread I can find is over 2 years old. Here goes...
My mom is 50 and was given a preliminary diagnosis of ALS about a month ago. She's fading fast. She can still eat and walk on her own, but she's beginning to hunch over and is losing strength and mobility. Of course I am desperate to find any tiny bit of hope so I used my super awesome Google skills and found this Hongyun Huang doctor in China who is offering stem cell transplants (for a lot of money) and I was wondering what the general PALS conclusion is on this. I read a lot of the patient files for ALS patients on their website and it looks like the benefits are short lived. One of your forum contributors said he knew someone who was getting this transplant annually and that it was working to keep him alive and high-functioning.
I am skeptical, as I should be, but I have to wonder if this is the right idea. The US has been so backwards when it comes to stem-cell research that I wonder if China's lack of religious fundamentalism has lead them to be further advanced when it comes to this sort of medical technology.
I'm not rich, I live paycheck to paycheck like most Americans, but I'm pretty sure I could raise this money and get the therapy. But is it worth it? If the transplant works and she improves or degenerates more slowly then are we going to be able to do this every year?
I have also emailed the University of Washington asking for her to be considered for the phase 2 trials for NP-001 and the phase 3 trials for Dexpramipexole. She is a recent diagnosis and can still swallow pills, her blood tests show normalcy (except for a recent clotting issue) so I hope she qualifies and can start one of these trials asap.
Is there anything else I should be doing? She is on Vitamin D and eats good foods (not vegan, but mostly natural and we are attempting to keep things preservative and additive free). Any suggestions?
 
There is no proof out there that stem cells do anything and anyone claiming they can do anything to ALS progression with stem cells now is a charlatan plain and simple. As far as trials goes try for the ones that you feel may help but make sure that the trial protocol won't cause undue stress. The best things to do also happen to be the hardest from time to time and they are to keep yourself informed and make life as stress free for the patient and caregivers as possible.
 
If we were considering stem cell, the only one we would be interested is the study at Emory University - definitely not overseas.
 
So far there are reports from some participants in the NP-001 trial who are regaining some function. I think that one is definitely worth consideration. God bless.
 
Stem cells in China, Mexico, Germany, Barbados etc are all a scam. U.S may be backward but at least they have control of medical treatments that have potential to kill you. Take a trip and make memories with the money instead.

AL.
 
Take a look at the threads below for more info.

AL.
 
We did stem cell treatment in Germany for my mom in Nov or Dec 2008 3-4 months after symptom onset, my mom died three months later. Positively nothing helpful from the treatment.
 
I should add that the center has been closed due to German laws.
 
So sorry for your loss, asantiago
 
Thanks for your replies everyone. I'm doing my best to try to avoid getting scammed and I'm naturally skeptical. Sorry to hear about your mom asantiago, I'm facing the same level of loss and it's terrifying. I am working on getting my mom enrolled in either of the current drug trials, but our area isn't yet recruiting. I'm hoping they will sooner than later and I'm hoping that my mom can push a 65% lung test. She been at 58%, and that's so close I'd hate to wait 6 months and find out she is no longer eligible because she's lost some lung capacity. Does anyone know if her eligibility will be in question because she's currently taking Coumadin for a recent lung clot?
 
Hi Valoree, I'm sorry that you're on this site, but welcome anyway.

I'm in the Dex trial, and though I don't know the answer to the Coumadin, I do know they are very concerned about heart failure, so that can't be a factor... they will do ekg's every time you see them. As far as the breathing goes, their machine registers differently than the ones that my neuro used, and they say it usually registers lower at the clinical trial site. I'm not sure she'll qualify based on her lung capacity right now for the Dex trial, so I would try to find a site even if further away if you think you want to try it.

May I ask what meds/vitamins your Mom is taking right now? You can pm me if you'd like to get into it a bit more, but suffice it to say that nearly everyone on this site probably has a list of supplements that we hope are helping... We should probably start another thread just for that!

Helen
 
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