share experiences?

[izziebean]

Hi. I would really like to talk to others who have had stem cells to discuss the different methods and how we are all doing. Anyone else out there?

[skreynolds57]

I had the treatment in Costa Rica (same as what they do now in Panama). I'm long time SPMS with no active inflammatory element. As such I did not experience any nerve repair and thus no improvement in function. While others have experienced improvements with stem cells, I'm not convinced that its due to actual nerve repair as much as due to the anti-inflammatory effects of stem cells or a treatment that slows/stops additional attacks and allowing myelin to repair (as with a remmiting period).

[BJG55]

It's been a year

I received stem cells in July, 2010. I went with Dr. Slavin in Israel, since he is a well known and well respected neuro. I was also SPMS - for about 4 years. I don't know what caused my improvements and I don't know that I care. All I care about is the results; my rapid decline stopped; my pain disappeard; I can now stand for more than an hour (before I was lucky to be on my feet 15 minutes); and my leg strength improved (verified by my neuro).

I still can't walk for long periods of time, but I feel much more like my old self. I actually have to remind myself that I can't do things, because I feel like I should be able to walk for 2 miles or go shopping with friends all afternoon (without having to sit down).

I'm really happy with my physical improvements. Of course, I would I have loved more improvements, but I'm so grateful for a positive change in my physical well-being. I was so afraid that the stem cell procedure was going to be a huge waste of money. I really feel like the procedure was worth every penny. Plus, it was a good reason to visit Israel again and I got to go to Greece, where we had a pretty good time.

I need to add the caveat that just like MS, the improvements (or lack thereof) are very individual. Not everybody that received stem cells improved. Good luck on deciding what to do.

[shucks]

Have you looked into the hsct stuff? I am trying to save up and find cash for it. It seems like it works over 80% of the time in rr and early spms.

[izziebean]

hi hi! Wow, thanks for the replies.

Steve, do you think that the stems have halted or slowed the progression or is that too hard to tell?

BJG55, that's awesome that you have had such a great response to treatment... especially with the pain.

Re-reading my original post, I think I was a little vague. I did have a stem cell transplant last year here in the states. In many ways, I've gotten much better. Like BJG55, I was being hit by m.s. so hard and the DMDs were not working for me. For me it was attack after attack after attack. And now, that has stopped (??? because I just had an MRI. Hope to get results this week). My walking is much better. Daily leg pain levels are way down, seems to be getting better with time.

But there are some ways that I am still struggling. For instance, migraines (part of m.s.?? one of my neurologists says no, other says yes) are hitting about twice a week. I didn't have them before my first lesion. Toe cramps, severe at times, where I can't move my toes up or down without cramping. We've checked potassium levels and I've tried staying hydrated. But is that part of m.s.? I can walk much better, but there is a limit before I'm struggling. Is that due to m.s. or due to muscle strength? Finally, this really annoying eyelid twitch that is daily for the past few months. I can feel myself blinking after I close my eyes. It's some weird muscle spasm tick.

I just have so many questions. Thanks for sharing with me.


BTW shucks, have you checked with insurance? Mine covered the whole thing except for $1,000 deductible.

[skreynolds57]

Steve, do you think that the stems have halted or slowed the progression or is that too hard to tell?

I would say no, it did not slow my progression.

[Tash1217]

I have SPMS. Going to Dominican republic on 10/27 for the fetal stem cells. Any advice?

[PanBogdan]

At my aunt tussis for a long time was observed, to it all the time couldn't make the correct diagnosis.. Tussis didn't take place, to the aunt everything became worse, and we began to look for medical institutions on the Internet and to look responses, to ask for suggestions on good doctors. As a result we carried the aunt to hospital, and at last the correct diagnosis which has appeared, to our big regret, was made to it by a cancer of a lung. In the same place it carried out treatment by fetalny stem cells. Now passed two months, to the aunt it is much better, positive dynamics becomes perceptible, and all of us hope for its sheer and fastest convalescence.

[JerryD]

What was that response ? This thread was about stem cell treatments and it had gone 'off the tracks', as far as I am concerned. Also those who had stem cell treatments in Costa Rica or Panama have not been very forthright with updates on their condition.
IMHO there are very few stem cell replacement programs in the world that actually work. But that is not to say that they do not exist. They definitely do. Seeking out the doctor, medical institute and the protocol are critical.
I would not have any treatment done at a facility that was not performing trials under the FDA's watchful eyes. And follow their former patients for a specified time. Good luck

[meburnett2004]

there is a facebook group that has peoples experiences and a lot of information about hsct. Google it in facebook its a group.

[JerryD]

Has anyone heard that the Cleveland Clinic has been studying the use of Mesenchymal Stem Cell infusions for treating MS ? I can't seem to find out more about it.

[Lisasberry]

HSCT

Hematopoietic stem cell transplantation is entirely different than so called "stem cell treatments", which in about 100% of cases are bogus in Latin American countries. I am currently undergoing HSCT in Moscow, one of four outstanding facilities approved for MS overseas, although I am US citizen, US trials and physicians will not even consider it for PPMS. I had very aggressive downfall - EDDS from 0-6.5 in less than two years. Even though still in the hospital, I have sen remarkable progress. There are no guarantees, but a rough percentage estimate of reversal or halting of progress is given. Studies date five years back with 65% having regained almost all function, somewhere around >30% halting progression and <5% with no success. Better than medication can do!

[JerryD]

Thanks for the response from Moscow, Lisa. Keep posting with your progress. I am dx'd with PPMS, also. Is your treatment protocol the same as the HSCT done at Northwestern Univ. ? Good luck

[Lisasberry]

Dr.'s Burt and Fedorenko communicate regularly, and it is very, very similar. Moscow is non-myeloablative. For those with aggressive forms, Dr. F, does and infusion of Rituximab to attack any B-cells that may have remained before being released from the hospital. He has with two of US patients recommended another infusion 3 months out. This insures that not only all T cells were wiped out by chemo, but B-cells as well. This produces the virtually the same as outcome Meylo, but without the rigors of such a difficult procedure as the BEAM. I do not think Dr. Burt does this. Recent 3 year studies released June 23, 2013 indicate negligible recovery differences between myelo and non.

[JerryD]

Thanks for your info, Lisa.
I think that there are others, here, that would want to know about your experience. I, for one, want to know how many dollars one needs to budget for the entire process. Travel, housing, hospital costs and miscellaneous other costs. I am sure that most of us are curious about both the costs and the protocol. Good luck