I went to my PCP yesterday and while I was there we talked a little about the fact that they are almost positive I have MS - I had to bring in all my meds so they could update their records, that's what started it. He's been copied on all of my MRIs and the reports because I wanted him to stay in the loop, but this was the first time Ive seen him since all of this has been going on.
As we were talking, he mentioned that he treats another patient with MS who is a little bit older than I am. He has the same symptoms as I do plus one or two that are a little more severe.... this person did some research and found a treatment that is not yet FDA approved in the US. From what my doc said, an insurance company in the US sponsors this and they have a facility in CA that they work out of - the procedure is done in Europe and is a stem cell therapy that has had very good success according to the available information. My PCP reviewed all of the info this other patient had on the procedure and felt very comfortable that the payoffs were well worth it and that the procedure is legit. Has anyone heard of this stem cell therapy for MS before? I am doing some online research but since I just heard about it yesterday, I haven't gotten very far.
Any kind of gene/cell therapy can have consequences that are detrimental to your health. I would want to see how the therapy is proposed to assist. Do they grow your own cells to re-implant them later? Though the FDA may be slow, there is a reason for the slowness. Many times we seek out treatments only to find that we are, in fact, being used for testing purposes. As with any course of treatments, what is the success rate and how much will it cost.
For me, MS is a pain, but as I chose not to spend my money on meds, it remains a pain that I refuse to allow to rule my life. I do not expect to see a cure in my lifetime, but I sleep well at night.
I had Stem cell therapy in Ireland 2 years ago. It was done by a company called Advanced Cell Therapy. I thought I had researched it well by I hadn't this company was a con and the cells that were injected into my neck, I found out later, were not suitable for humans. I was very lucky not to have had any serious side effects. I had no improvement in the MS symptoms and wasted £7000. I was angry and upset at first especially when this company's con was shown on TV about a year after I had it. I'm just glad nothing bad happened to me !!!!!!
Do you have any more specific details? What is the name of the company? What kind of stem cells? how exactly do they think these stem cells treat MS? The idea that you just need to inject some stem cells into a person with MS and they'll go to the sites of damage and initiate repair, simply doesn't make scientific sense.
I think a healthy dose of skepticism is in order. I'm not saying there's no way this treatment will help, but, I'm not optimistic.
I"m trying to remain hopeful on this subject for the future. In theory at least, a stem cell can turn into any cell, and I was taught that the cells "know" where to go. For instance with MS, you could grow new brain/spinal cells or tissue and inject them so they'd get rid of lesions. In practice, I have no idea if this would work. I know they are doing a lot of research in Europe though. Two of my doctor's MS patients are in Switzerland now getting this done. I certainly wouldn't spend my money and do it right now with the minimal proof, lack of evidence, and lack of knowledge with side effects. In the future though, maybe this will be a viable treatment for MS, as well as hundreds of other conditions.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
I was desparate and naive enough to trust this company when I contacted them I spoke to someone who sounded trustworthy and their were many good testimonials on their website, some had good results, some didn't. I couldn't get any info re stem cell therapy anywhere else . Doctors here don't know anything about it. The doctor who gave me the stem cells was a GP in Ireland. I have had communication from the Irish medical board to say that they are investigating him and he may be struct off. I have put this experience down to bad luck, I never thought people would rip off the disabled but again I was naive.!!!!
Thanks, yeah the company was supposed to have been shut down as they were a subject on a TV documentary that blew the lid off the two people doing this. They were based in south africa, but had people in Mexico, Amsterdam and Ireland working for them. Their web site is still open so I think they are still working. A lot of people from the USA seem to have dealt with them but please don't believe everything you read on their site like I did.