This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Fri Sep 01, 2006 4:37 am**

I have attached an article that appeared on the MSRC website. It is of particular importance to me as it was after reading this article that I came to the decsion that should things get worse, I would undertake stem cell treatment:

'Miracle' MS cure dismissed
A young multiple-sclerosis patient who walked for the first time in five years following expensive stem-cell replacement therapy has warned fellow MSers not to waste their money on it.
Amanda Bryson, 20, began walking again minutes after receiving the treatment in November 2005.

But her condition has since deteriorated so much she is now as immobile as before the treatment and is confined to a wheelchair. Her warning comes after experts told patients to beware of such "miracle cures".

She said she felt guilty for having given fellow MS patients hope the treatment could be a wonder cure for conditions such as multiple sclerosis, as the therapy, which is not licensed in the UK, can cost up to £15,000 from clinics in other parts of Europe. Ms Bryson, from Inverness, said she had even heard of people remortgaging their homes to raise enough money to pay for the treatment.

She said: "For the first month or two I was absolutely fine, but now things are the way they were before. I have secondary progressive multiple sclerosis and I am back where I was before the treatment. In my opinion it is a big scam."

Ms Bryson's family raised about £12,000 for the treatment at the private PMC clinic in Rotterdam, the Netherlands. She said she felt bad for families who had made huge sacrifices for the treatment.

"It is an expensive scam. I feel really bad for getting other people's hopes up," she said.

She went on: "It could be a placebo effect that makes people feel better because they want to believe it will work. It is a short-term effect. To me it seems cruel. I gave it a go,

"I thought it had worked but it didn't. The effects wore off months ago."

Ms Bryson was believed to be the first Scot to have benefited from the controversial treatment. Shortly after receiving the therapy last year, she said: "I am now able to walk again. For over a year I could only get about in my wheelchair, so it is amazing the difference in just a matter of days.

"It sounds shocking, but I could feel the difference after just five minutes. Since the treatment I have been transformed. I am doing things I couldn't do a year ago. Hopefully, I will be fully recovered in a year."

Ms Bryson was struck down by the muscle-wasting disease at the age of 14.

Source: The Scotsman ©2006 Scotsman.com

I guess I may I have to find another plan B!

Posted: **Fri Sep 01, 2006 9:59 am**

I still have faith in stem cells. I just don't think that they are going to be available anytime soon. I am not sure what this lady's story is and how she got her stem cells. There are obviously a number of scams going around in this field. I wonder if she was from the group that got a SC injection of stem cells to the back and neck? Would you know that Topcat? I will do a goole search and see. Will report back if I find the answer.Yeah...that's not gonna work. I feel terrible for her. It's so sick what ppl do just for money.
NN
Keep the faith in stem cells. There is a lot that we don't know about them.

Posted: **Fri Sep 01, 2006 10:38 am**

I did not find any reliable (no primary sources)sources, but it seems like she got injections and IV doses. Both of which I don't think would get to your brain. Anyhow...I feel bad to say this, but, I am just glad that she is not part of the research that is going on in Canada where they give you chemo and transfuse you with stem cells in the hopes that you are given a whole new immune system. There are lots of scams out there and this is one of them. I don't think we should give up hope on stem cells. Anyways...this seems like it is old news...why is it coming up now? I now do remember reading this before. I hope this is not Bush’s way of proving stem cells don’t work.

http://www.goodnewsblog.com/2005/11/17/ ... s-in-hours
NN

Posted: **Fri Sep 01, 2006 6:33 pm**

her speedie recovery sounds a little too much like a placebo effect. However, even if the stems cells worked 100% to repair the damage, if they didnt fix her immune system from attacking her myelin, I dont see how anyone could of expected that the disease would not continue, and hence all the repair be undone.

Posted: **Sun Sep 03, 2006 5:40 am**

Stem cell research is certainly in its infancy, especially with MS. There are the private clinics that are offering very expensive stem cell treatment where you, the patient, is the "guinea pig" for this experimental procedure. Problem is you are paying a lot of money for something that very little is known about so far.

The other research, such as that being done by Dr. Freedman in Ottawa, attempts to change your entire immune system in the hope of beating the disease. Problem here is that even if the immune system is changed, what happens if the cause of MS is something other than the immune system? That problem is still lurking in your system waiting to attack again. At least Dr. Freedman's work is true research and the patient doesn't have to pay for something that is unproven. It also has about a 5% mortality rate!

I do have concern for these "private clinic" stem cell procedures. I feel these places are taking advantage of the "stem cell treatment" hype and making patients pay a lot of money for that. At least Dr. Freedman is a well known, very compassionate MS researcher and is conducting his program under very strict guidelines and procedures....and one doesn't go broke if he/she decides to try it.

Harry

Posted: **Sun Sep 03, 2006 6:24 am**

Harry,

You almost gave me a heart attack - I thought you only posted on the Tysabri forum!

There's some feisty new Tysabri supporters so you probably need a break from the onslaught.

As you mentioned Dr Freedman - attached is a recent article about his work with bone marrow transplantation. Particularly good results were seen with one patient - Jennifer Molson. But of ourse only time will tell if this extreme form of treatment really does knock MS on the head for good in those patients who undergo it.

http://www.msanswers.ca/QuestionView.aspx?L=2&QID=20

The stem cell treatments being offered in Holland at £14,000 a treatment are now receiving a lot of bad press in the UK. Patients who claimed big improvements are now saying that they are back to how they were!

But proper research in this field is progressing in a number of countries. One of the UK's leading experts in this field is Professor Scolding who has been funded to examine bone marrow stem cells (which will avoid the problem of rejection and the ethical issues associated with stem cells from embryos). He hopes to start human trials in the next two years.

http://www.mssociety.org.uk/go.rm?id=4700:1

Ian

Posted: **Sun Sep 03, 2006 7:32 am**

Hi Ian,

You almost gave me a heart attack - I thought you only posted on the Tysabri forum! There's some feisty new Tysabri supporters so you probably need a break from the onslaught.

I'm just full of surprises but geez Ian, please don't have the "big one" after reading my post

Yes, there are tons of unanswered questions with stem cell experimentation with MS. Freedman's work is progressing but it could take years to determine if the MS has been placed in check. I keep on thinking that if MS's origin is indeed not immune system related, what will the disease do when another, new immune system is present?

The stem cell treatments being offered in Holland at £14,000 a treatment are now receiving a lot of bad press in the UK. Patients who claimed big improvements are now saying that they are back to how they were!

That is very sad to hear. If this procedure was indeed research based, then the patients shouldn't be charged anything. But we both know how MS patients will pay big sums of money in an attempt to obtain better health.

Stem cell work is going to take years and years of work because of the various kind of cells themselves as well as many different procedures that can be used.

Take care.

Harry

Posted: **Sun Sep 03, 2006 9:32 am**

HarryZ asked,

Problem here is that even if the immune system is changed, what happens if the cause of MS is something other than the immune system?

Since I do not subscribe to "autoimmunity" as the cause, I think it is quite possible to have another cause. Years ago I saw an episode of a TV program called "Unsolved Mysteries." It dealt with a woman in a wheelchair with MS; she took a jolt of electricity through her bathroom plumbing as she was turning on the tub when lightning struck it. She was even thrown out of the chair and across the room. From that time she improved, started walking, and the program ended with NO signs of MS in her.

At the time I believed in a bacterium or virus as the direct cause and assumed it had been killed off. Now, as you know, my belief is that the pancreas produces excess insulin, which starts the disease. Could the jolt have set the pancreas to normal?

Back to Harry's question. When the truth is known, we will all say, "Oh, yeah, that's why that happened. It makes perfect sense; why didn't we see it before?"

Posted: **Sun Sep 03, 2006 12:47 pm**

Posted: **Sun Sep 03, 2006 4:05 pm**

Bob,

I'm curious to what they meant in the article when they said that "all traces of MS" were removed. Since nobody knows what causes the disease or even if it's auto-immune or not, I wonder what they supposedly removed.

Perhaps it was the writer's own interpretation of what happens when one's immune system is destroyed and then replaced. Any ideas on this anyone?

Harry

Posted: **Sun Sep 03, 2006 5:30 pm**

Posted: **Sun Sep 03, 2006 7:42 pm**

Hi Bob,

Because the procedure wipes out the entire immune system, the writer took the liberty to state "all traces of MS were removed".

I can see why a writer would say something like that but I'm thinking that from a medical point of view that could be considered a very inaccurate statement.

At the moment, nobody knows what is involved in MS other than myelin around the nerves gets attacked and eventually the nerves destroyed. After 50 years of research nobody can provide us an answer.

Perhaps by looking at all these stem cell patients in a year or so from now we may have a better idea of what may or may not happen to them down the line.

Harry

Posted: **Mon Sep 04, 2006 4:57 am**

Hi Bob,

Came across this brief article this morning... I guess one main concern with this group of 21 was the mortality rate was about double (9.5% vs 5%) than what has been stated so far with this procedure.

Harry

________________________________

HSCT IN PROGRESSIVE MS
In an effort to observe the risk/benefit ratio of autologous hematopoietic stem cell transplantation (HSCT) in progressive MS, researchers from Shanghai First People's Hospital in China treated twenty-one patients with progressive MS with autologous HSCT.

Median follow-up time was 42 (6-65) months. The probabilities of confirmed progression-free survival and disease activity-free survival were 75% and 33.3%, respectively. Adverse events included allergy, infection, elevated liver enzymes, transient neurological deterioration and depression. Two patients died of severe pneumonia and varicella-zoster virus hepatitis, at 4.5 and 15 months post-transplant, respectively.

Researchers concluded that autologous HSCT appears beneficial for treating progressive MS. Larger studies with longer follow up are needed to assess the risk/benefit ratio.

MORE ON STEM CELL TRANSPLANTATION
Until recently, the two major types of hematopoietic stem cell transplantation (HSCT) have been autologous and allogeneic transplantations. A third type, umbilical-cord blood transplantation (CBT), is now being used more frequently.

Autologous transplantation refers to the use of the patient's own stem cells as a rescue therapy. Allogeneic transplantation refers to the use of stem cells from a human leucocyte antigen (HLA)-matched related or unrelated donor. Umbilical-cord blood transplantation refers to the use of stem cells from the cord and placenta, which are stored in cord blood banks.

Posted: **Mon Sep 04, 2006 5:53 am**

HarryZ wrote,

I'm curious to what they meant in the article when they said that "all traces of MS" were removed. Since nobody knows what causes the disease or even if it's auto-immune or not, I wonder what they supposedly removed.

Plasmapheresis, a nonselective process (it even removes calcium), has been done on some MS patients and shown a temorary improvement in some. Given my belief in insulin, I wonder if it might be removing insulin (until the pancreas replaces the excess level again).

In the stem cell transplantation, could the chemo or the HSCT itself be shutting down the pancreas for a while? Rather like using an elephant gun to get a mosquito! But then, the pancreas might recover and return to its abnormal insulin production with a return of MS symptoms.

Wouldn't the researchers be checking all these hormone levels before and after? If so, they could put all my questions to rest quite easily!

This Is MS Multiple Sclerosis Knowledge & Support Community

Stem cell failure

Stem cell failure

Other possibilities?

What did they remove?