This Is MS Multiple Sclerosis Community: Knowledge & Support

A company called Advanced Cell Therapeutics is now offering stem cell transplants using umbilical cord stem cells...It looks so promising that I'm booking myself in there as soon as possible! It is unfortunately quite expensive (about 18,000 euros). Their website is http://www.stem-cells.com/contact.html.

Alex

Alex,

I don't know if you saw the recent case in the papers in the UK of a woman from Liverpool who had the same / similar treatment (I think it cost £14,000). She was diagnosed at 40 and five years later was said to be heading for a wheelchair.

The UK MS Society must have been inundated with questions and published the usual reponse - http://www.mssociety.org.uk/go.rm?id=14188

Of course the Society is funding some projects in this area, but as usual it's ten years away before anything likely to come of it (if at all). Not sure what you position is but given the pretty poor options on offer why not go for it? What is the risk, apart from losing some money? You've only got to look at poor Richard Pryor to see what might happen.

Hope all goes well if you decide to go ahead. It's just a pity that MS sufferers have to pay and hunt down any possible options that are going because mainstream medicine (especially neurology) has made such limited advances.

Ian

Hi Bromley,

This is the very same company which treated the lady from Liverpool. I haven't yet talked to their consultants but looking through some of the stuff which they sent to me it looks as if umbilical stem cells are the magic elixir for a variety of "incurables" and seem more effective than allogenic marrow stem cells, embryonic and adult stem cells. As I am losing patience with the antibiotics I am determined to give it a go. As I understand it the risk of rejection of the transplanted cells is minimal as they are purified in some way. Naturally the treatment tends to work better the earlier in the disease course and naturally there are no guarantees but I think it's worth a shot.

Bromley, I just read your link to the MS Society's statement on stem cell research. Their cautious stance has everything to do with lawyers, I'm sure. Thank goodness for websites such as these where we may be able to offer some hope to others!

If this works we will have to raise a few million to set up a fund for PWMS so that all can go to Holland for a quick spinal injection! I think we can be fairly sure the UK MS Society won't help there.

Alex,

Given that the interferons cost £10,000 a year with limited efficacy £14,000 for new cells isn't so bad. What's the risk - we might get ill (but we are ill and will continue to get worse so not such a risk afer all!).

I'm in the relatively early stages of this disease but my father's friend died in his early 50s and it was pretty grim. I know not all turn out this way but I don't see many with MS running around the park, leading companies, having a great retirement. My father's friend died 20 years ago and I'm not sure much has really advanced since them - except the usual calls by the Societies that MS will conquered in the next decade and how they need more cash to achieve this.

My view is this - you get one life and we have the misfortune of getting a grim 1: 1000 disease. For some, they see this as one of life's challeges 'make the best of it approach'. I'm at the opposite end of the scale. The thing that makes us different from the apes is that we walk upright, can think better and have some dignity over our toilet activities (just my view). MS isn't going to rob me of these distinctions. When the time comes I'll be over to Holland to get those cells. MS is robbing us of our axons / neurons so trying to get them back must be worth a try.

Good luck

Ian

I'm with you, bromley. To me, the only cause for concern is not "might there be bad side effects?" but "Is this a scam to seperate sick people from their money?". There was a place in the Ukraine, I think, that claimed to offer stem cell therapy but was quite clearly a scam. Recently we are starting to see more reputable clinics offering what appears to be actual, if very experimental and relatively untested, medical therapies. Do they work? If they do work, do the benefits last more than a short period of time? Who knows at this point. But it's worth trying if you are very sick and have the money.

My personal view? I'm sooo there for stem cell therapies. Inject it in bloodstream, my spine, or just shoot it directly into my brain. I don't care. Hell, I'd drink a Stem Cell Slurpee for breakfast every day if I thought it would help.

Whoever is the first at this site to sign up for one of these things will be under the spotlight.

Hi all

I don't have MS , i have Muscular Dystrophy. I know someone who has just had therapy at this clinic a week and a half ago , as yet he's not noticed any benefits (although could be a few months before he does) ...

just wondered if anyone from here as experienced the treatment and has any feedback ...

take care

Andy

I'm glad I logged on here to read some of your letters on SCT. I had enquired to a few stem cell therapy companys and was "in the dark" whether to pusue the treatment or not. I had the feeling this was at this time a "scam to get money". I guess I'll hold on to see if anyone really comes up with a good treatment. I don't have that kind of money any way.

I'm having an interview with Advanced Cell Therapeutics tomorrow. I went a month or so ago to see a doctor who works with them in his clinic close to Harley Street. I have to confess that he was on the wackier side of the medical profession and was suggesting that I undertake some form free radical purging in a Dutch clinic prior to receiving the stem cell injection. The doctor, Dr Trossel, was however extremely pleasant when I challenged him over the absence of institutional recognition for Advanced Cell Therapeutics and concurred that as there was no university or hospital affiliation I had no guarantee that they weren't cowboys. In spite of the unorthodox presentation I am going to pursue this treatment if only as a kind of experiment. My whole adult life has been one long bio-chemical experiment so no point stopping now!!

Been there, done that. It definitely helped but don't expect anything too dramatic and don't get too excited too soon. I thought I was cured for a short while but unfortunately regressed after roughly three months, My left leg is still better than it was though - it was my bad, trippy leg before the treatment - now its stronger and under more control. Knees are pretty stiff at times. Wobenzyme helps a bit. I'm on antibiotics at the moment and they had an immediate effect too which has dwindled slightly. Anyway I found Dr Trossel and the staff at the clinic in Rotterdam to be extremely friendly and caring and wouldn't hesitate to go back for a top-up if I could afford it. I'm also hoping Aimspro and Sativex will become available soon. With any luck either/or will help with the stiffness. Anybody that fancies a discounted treatment from ACT should contact Laurence Finestone at SpotlightLDN. No connection to me, btw. I just know of him from another message board that he posted on (MSRC).

BB

Well, I just spent a good night with a friend in private equity who is living in Cape Town close to the owners, Laura Brown and Steve van Rooyen of Advanced Cell Therapeutics. As he wanted to check their credentials he offered to discuss capital investments with them but was turned away immediately. He then dug around and discovered that the owners of the company used to trade under a firm called Biomark in the USA, which was closed down by the FDA for fraud. Neither owner comes from a medical background. Indeed Here is a link on them http://www.suntimes.co.za/Articles/Tark ... ID=1413452

I'm afraid that I will not now be attending their clinic. Apparently they have a very nice house in Llandudno, Cape Town.

That doesn't sound like good news!

However, I am now confused!


Was this the clinic who helped the lady from Liverpool get out of a wheelchair?

J.

Yes, I believe that Advanced Cell Therapeutics is the company which helped the lady from Liverpool. However I do think that she is one of only a very few that have benefited from the treatment. The main beneficiaries have been the couple living it up in Llandudno, one of the most exclusive areas in Cape Town.

Well I am shocked.....there must be other more genuine people who do this I am sure (the stem cell therapy, that is).

I need it as a safety net!! Right now things are pretty grim...

J.

Different neurological disease / different clinic but similar approach.

Neurological diseases are the worst!


http://news.bbc.co.uk/1/hi/england/mers ... 527744.stm