This Is MS Multiple Sclerosis Community: Knowledge & Support

do i go with CCSVI I have applied for this study at U Buffalo, or Beike's umbilical cord, mesenchymal cell lumbar puncture in China or adipose tissue, your own MSC stem cells from your fatty tissue, being studied at UCSD but they are not recruiting now. But got their protocol from Stem Medical Institute Panama and Costa Rica where the treatment is available, or bone marrow extraction and cleansing and returned to body in Germany? I know this isn't a lot of info. I have more on each one...but putting this out there to see if anyone has more infoo.

If you can I'd go with Rituximab (Rituxan) for a couple of years while the results come in on CCSVI. I'd be a bit wary of commercial stem cell treatments..

It's pretty safe and you have a very good chance of not having a relapse between now and then.

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Apologies for my terrible username. I never thought I'd use the forum much when I registered..

I've had stem cell treatment and am now looking for a vascular surgeon or interventional radiologist who is looking at CCSVI. I also have my name on more than one list for clinical trials... I think CCSVI is the way to go. After that, if there is still a level of disability I would consider more stem cells. just my personal opinion....

hannakat - it sounds as if you're did not experience good results with the stem cell therapy...?

Hi Hannakat,
Hope you dont mind but where did you have the stem cell done in which country?
I am looking into `adult stem cells at the moment and there is so much on the internet it gets too confusing as to where to go and which treatment to have ?
What results have you had since the treatment? & how long since your treatment. It would be good to hear your experience with it all.

I received a mesenchymal stem cell infusion in December in Athens. The doctor organizing things is Dr. Shimon Slavin of the CTCI in Tel Aviv. I had the extraction in Tel Aviv, they cultured the mesenchymal cells, and then the infusion.

I was debating at the time waiting to learn more about CCSVI, but I'm glad I didn't. It's now been almost 2 months, and I have experienced amazing recovery. The cell therapy is expensive - USD$28,000 - but well worth it. I am doing better, and based on past performance of the therapy I can pessimistically expect at least 3 years of remission, perhaps more. This is allowing me to relax a little bit and find out all I can about CCSVI scanning and treatment. I'm on the BNAC list, obviously, and I'm in touch with Stanford, but if it takes months for things to become more clear, I am not loosing time!

If you can spend the money, contact Drs. Slavin or Gesundheit at the CTCI in Tel Aviv. Their patient co-ordinator is named Orit, and her contact info should be easy to find online. Dr. Slavin has been researching mesenchymal stem cells for longer than anyone else, and is the absolute top of the field. The people in Germany are a close number two, from what I read, so they're also not a bad option.

Meanwhile, while you are organizing that, or deciding between treatments, I am going to strongly encourage finding a Dr to prescribe LDNs to you. Low Dose Naltrexone is cheap (~USD$200 for a 6 month supply), effective for many people, and it has zero contraindications with any other treatment. It's completely safe. It's not the MOST effective drug out there, but it has helped people at all stages of MS by slowing relapses and even leading to certain amounts of recovery. It is NOT worth waiting to get on LDNs. Go to http://www.lowdosenaltrexone.org/ to find out more, and to find a list of Drs and pharmacies that deal with LDN.

Ikulo .... I have had some positive changes but they have not all 'stuck' if that makes sense. Things seem to fluctuate quite a bit. I had improvement in fatigue for a while but it changes constantly now. The foot drop improved for a while but has returned (I sure hope it goes again!!!) I've had MS for over a decade. I can still walk but with difficulty using a cane. For shopping I use a scooter. Although I've gotten stronger (Have been doing PT since the infusion) my walking really hasn't changed all that much nor has my balance. I was really hoping it would make more of a difference with walking.

Kats ... I chose Dr. Slavin with CTCI. Had the bone marrow aspiration in Israel and then the stem cell infusion in Greece.

I've kept track of many people who went to Greece and have to say that I've been a bit discouraged by the stats.....more than I care to admit or sometimes think about. No one regrets it though because you just never know.

Iriehs...you mentioned 3 years of remission again... Did Dr. Slavin tell you this?

I have a friend who has postponed her stem cell infusion in Greece until after she can be tested/treated for CCSVI. It does make sense to fix the problem first if possible. I don't know what I would have done if CCSVI had come to light a little sooner than it did. All I know is that I'm pursuing it too. Stem cells are not a cure and if what they are finding out about CCSVI is true, there's good reason why they aren't the cure! I hope to be tested and treated if necessary at the first possible moment!

We all have to make our own choices. I agree with Ariehs that if you have the money, go for it. If you're healthy enough to wait for the results of the CCSVI studies, then wait. Just MHO...