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Donna Schenk

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Mar 25, 2011
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Reason
PALS
Diagnosis
01/2011
Country
US
State
IL. 61008
City
Belvidere
Has anyone done stem cell therapy for ALS? In the US?

I'm hearing about Center in Germany. They claim to have had some positive results, but of course, no guarantee.
 
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Save your money they're rip off artists. Look in our research section. There are trials going on in the US.
 
Emory in Atlanta is underway, but not for "Therapy" yet. They are still asking for volunteers to determine if it is a safe proceedure...no benifits are claimed.
 
Donna, my husband looked into the procedures being done in Germany. He wanted so badly to believe that it would help. We spent months checking into all of it, and as Al said, it is really a scam. Don't waste your time or energy. See if you can get into a Phase II trail here in the US.
 
I took part in the trials at Emory. As Bad Balance stated they are focusing on safety first. That being said they had positive labatory results with mice and rats. I would not get involved with the numerous scams going on in other Countries.
 
Hi I have also looked into this to help my stepdad , stem cell in Germany is NOT clinically proven and the risks are far more dangerous than ALS itself , they told me they could do it for my stepdad but it would cost £30,000 for the treatment! I find it disgusting and when I spoke to mnd association they said it was a scam and don't go there , there is how ever a clinic in Sheffield uk that are clinically proven trials but not guaranteed to work x hope this helps and if I stumble across any other info I will post straight away x
 
Go to the Emory ALS website and look under clinical trials for stem cell research. The forms that you have to sign are all telling....a lot of legalese to protect the hospital, but also warnings about how things could become worse rather than better; and this is a respected program.

I hope that good things happen, but those that volunteer are are heroes in this battle. There are no guarantees.
 
You definitely need to do your homework. As Bad Balance said it is a respected and credible program. It is not for everyone. It is early for me yet but I have definitely not gotten worse, who knows what the stem cells and / or drugs will do to me down the road but I definitely know what ALS will do to me. It is a very personal choice with no correct answer, to me I know the odds but and they are very blunt to not expect it to help you, but I felt that at least I was doing something and part of something bigger at the sametime that could ultimately lead to help for present and future PALS.

Do your due diligence and if you feel strongly enough about it, only get involved in a credible and reputable clinical trial.
 
Just to set the record straight. My mom went to Germany to have it done. It is not a SCAM! She looks better than ever and feels great. So don't put something down where you have never been or done!
 
Let us know how she's doing in 6 months. The placebo effect usually runs out in 3 to 6 months. It still is not accepted medical practice in the US Canada and most other developed countries. They can't all be wrong. Maybe someday soon it will work but there is no evidence that it works yet. Sorry.

AL.
 
My mom looks younger and feels better. We are very hopefully and thats what most of us have is hope and faith. I do research almost everyday looking for something that will help. I will keep you posted and let you know how it works for my mom.
Germany is more advanced medically than the US. Everything is approved and not just blinded. I wouldn't have suggested to my mom about going if I thought for a min it was a scam. At the point most people are what do you have to lose. You would try anything to save or slow down this disease wouldn't you!?
 
First of all let me stress that I hope and pray it helps your Mom. I hope and pray this helps your Mom.
I do have some questions. I am not a Dr nor an expert. I have done a lot of my own researchm cell treatment.

What type of stem cells did they utilize? How many did they give her? How did they introduce them into her body? Is she on any autoimmune supressing drugs so her body does not reject and attack them? Was this done in Cologne Germany by chance? What is the name of the company that performed the procedure?
Thanks for sharing this information and again while I and others may have our questions and concerns about foreign stem cell companies it does not change the fact that I sincerely hope it works for your Mom. When does she go back to her Neurologist here in the US?
 
I know 2 people who have had it done in Dusseldorf.

One of them did it a year after diagnosis with limb weakness, but still very mobile. He had a major slowdown of symptoms than during the 1st year of diagnosis. Was this the treatment or a natural ebb and flow of progression? *shrugs*

The 2nd person I dont know much about. But hers was slow moving so it's hard to judge what it did if anything. We haven't spoken in quite awile. I may have to just search for her email and followup.

I'm a believer in this treatment to a certain extent. I dont think it's been developed enough and needs to be figured out more to be reliable and effective. But think they're on to something. I think results need to be more reliable and duration of effect needs to be longer. I'm thinking that with refining, this process can seriously slow down als progression permanently. Not willing to say cure though.
 
My mom did it in cologne Germany. It was 1 treatment with her own bone marrow. They did it through an IV. She said 1 day longer in Germany and than went home. They said that if it works for her which can take 2 to 6 months given her age than she comes back next year for another treatment. they do not guarantee it 100. There is nothing in life 100 but she said she has nothing to lose. She feels great and looks alot younger than before. It is not a mircle cure but its hope and I think that is the best thing we have right now. My mom does not give up and she is a fighter.
I'm sorry I got so mad before but I am very upset with this disease like everyone is and I just pray alot.
It was at the xcel center.
Sandy
 
The x-cell center has until this summer to come up with scientific proof to back up their stem cell treatment if I have understood correctly. All people are different and respond differently to treatment. I've been thinking of this treatment myself.
 
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