This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anybody heard of the autologous stem cell treatment offered at Tokuda Hospital in Sofia / Bulgaria ? They are using non-expanded bone-marrow or adipose tissue derived stem cells. This is the same hospital where Dr. Petrov has specialised in CCSVI treatments and Dr. Grozdinski is the contact person for both. I have been in contact with him and have received an info letter, which doesn't answer most of my questions...
This is why I am actively searching for somebody who would know someone or even better, has had the treatment himself.
Thank you so much for any help and should you be interested by the info that I have so far, I'd love to share

Hi girl69,

I have been in Bulgaria in February for this specific infusion of autologous stem cells.
I am French, EDSS 4, SPMS.

I am not sure to have many details to give you, they took the autologous stem cells from bone marrow the morning, and after filtration they injected again the stem cells the same day, at the end of the afternoon.

I didn’t feel any high pain after the procedure, but unfortunately today after more than 3 months, I don’t feel any improvement.

I asked to Dr Grozdinski before to go in Bulgaria what was the difference between his procedure and some other ones including multiplication phase for stem cells.

Hereunder is his reply :

“Hi, you can come in february the 5th , you decide when will be good for you and keep us in touch. The mechanism is different. When we wxtract the stem cells from the bone marrow ,we filtrate them i enrich them with growth factors ,the same day 4 hours after the extraction we implant them through the femoral artery using catheter in the carotid artery so the concentration of stem cell is higher in the brain where are the lesions.”

If you take the decision to go there, be sure it is clear with them that you are only interested in stem cells, not CCSVI, because despite my several mails, I had a bad starting discussion with them about the price.

We established an association of MS patients, with one web site and one forum in French, www.forseps.org, don’t hesitate to visit us.

Kind regards,

Fred

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www.ForSEPs.org

I'm currently going for my MS in the Ocrelizumab trial in this hospital, but the neurologists there are skeptical about stem cells. They said that they are doing stem cells in the hospital, but the results are not very good for MS, and they don't recommend it. CCSVI and stem cells are big income to the hospital, and wouldn't trust them for something that is not checked yet. I'm hoping that they will start HSCT there, but there are no indications that this will happen anytime soon .

Let's try to compile some facts of what is available around the world for CCSVI + stem cells.
Here are some questions to ask on MS treatment with stem cell + CCSVI

1. Price, does it include travel expense
2. What is the source of cells, autologous (your own) or allogenic (from a donor)
3. If self, what is the source, bone marrow or adipose (fat) tissue
4. How many millions of cells
5. Is it IV infusion, or injection into spine
6. Are the cells expanded, if so for how long
7. Are the cells differentiated into specific types of stem cells, or left to do this on their own in the body
8. Are they using immune system ablation

I know this combo of CCSVI treatment + stem cells is being done in India and Bulgaria.

India: http://www.ccsviclinic.ca Read the Treatment page.
Bulgaria: Procel Medical Center in Sofia, Bulgaria. I could not fin the website.

For those in the USA, you can get CCSVI treatment done on your own, and then follow-up with stem cell treatment, now available in Houston Texas.
It is expensive like overseas clinics, but it is under an IRB approved trial, so the results will help get this approved in the US.
Huge number of cells via IV infusions, 600 million, derived from your own adipose tissue, expanded over 6 weeks, but not differentiated.
Phone 713-590-1000

Here is Texas Representative Hardcastle, talking about his treatment there for MS http://www.youtube.com/watch?v=un65QtrXztw

There are also several bone marrow source stem cells for MS trials in the USA now, w/o immune system ablation, I will try to assemble that info, because it is w/o patient cost, other than travel.

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RRMS '96 SPMS '02 | Dual jugular vein stenosis (CCSVI) | 10/09 3 stents, 1 angioplasty. Details http://healingpowernow.com

Hello Pesho,

how are you doing with your Ocrelizumab trial? Do you have rrms or the progressive form? Any improvements?

Are you talking about the Bulgarian hospital regarding stem cells?
If they do not do colony expansion, I would be very surprised if they had positive results. This guy in Bulgaria is doing everything that makes money for him (see CCSVI). Only a very few respected clinics do colony expanded MSC outside of clinical trials. As I read it here in some publications, there the success rate is around 60% with no major side effects. I would assume if half a dozen of clinical trials are going on with MSC for MS, there should be some supporting evidence behind it.

I am also looking at HSCT as a viable option, but even dr Burt said that HSCT is not for everyone. There are patients who do not benefit from that.

Neither, Ocrelizumab, neither HSCT and neither MSC are clinically approved for treating MS. The only indication what we can see whether a clinical trial has started with them yet. If it has, then we might see some preliminary results. All the other info is anecdotal, scientifically not proven. Of curse, if preliminary results are promising, then it might be worth jumping in either a clinical trial, as you correctly did with Ocrelizumab or with stem cells might be at a reputable clinics where they use the same protocol as in the ogoing clinical trials (Bulgaria is not like that).

Ocrelizumab trial is going. I don't feel that bad, but I'm not great. Still have pain in the back, knees and some leg weakness. I mean I was naive and expected full recovery from my first attack. The best thing is that I'm not getting worse, hope for a very, very long time. I'm in the medical trial, because I don't qualify for medicine from the government here . You must have had two attacks in the last year in order to get free medicine, and I had only one. Well, that is healthcare in Bulgaria. MS is RRMS for now. Hope to get HSCT in Moscow sometime next year, don't want to wait more. Just have to get the funds.