Stem Genex

[Sunshine]

Hi Peg! I am considering Stemgenex in Cali. I have multiple sclerosis (balance issues, bladder, heat sensitivity, fatigue) Since you had your stem cell procedure how have your MS symptoms subsided?

Welcome to Braintalk. I hope you join our nice community :) while it shows I only have 29 posts or so, I actually am an ancient member and have had hundreds of posts in the past years. So, WELCOME!

[Gary]

Hi Msgirl,

Welcome to BT. This is a great place to hang out. One of the few places that you get information and make friends at the same time.

[Cherie]

msgirlohio,
I've spoken with three folks other than Peg who have had this procedure done and saw no improvement. Like Peg, none felt any pain and thought the folks were lovely. Like Peg, none of them saw any improvement in their MS symptoms and all have continued to progress. I have also contacted the Advocates for the company and spoke with them at length. They tell me that sometimes it take 2-3 treatments 6 months to a year apart to see results, especially in more advanced or progressive cases of MS. I just can't see spending that kind of money on a therapy that is not proven through clinical trials to work.

[Lazarus]

Hi Peg! I am considering Stemgenex in Cali. I have multiple sclerosis (balance issues, bladder, heat sensitivity, fatigue) Since you had your stem cell procedure how have your MS symptoms subsided?

Hi MSgirlOhio...
Have you been following the stem cell journey of Richard Cohen? If you Goggle Richard Cohen stem cell journey you should get there. He writes a blog where some of us follow his progress. But I think his cell transplant treatment is not the same as what Peg had. Richard Cohen is Meredith Vierra's husband and his site has the actual procedure filmed by their son...harvesting stem cells from spinal cord to the replanting of those cells and waiting...waiting..

I am weary and too lazy to look for links to evaluations of the process you are considering. But I remember cautions about the promises made......I will look for links....

[GeorgeC70]

Hi I just joined this site looking for unbiased information on this procedure. I'm on my 3rd medication so far. Was seriously considering this but am hesitant about things. Where should I search for more information?

[agate]

Hi George C70 and WELCOME!

Not sure if "this procedure" means the Stem Genex procedure, but in any case here is what the National MS Society says about stem cell treatments:

Only registered and activated users can see links., Click Here To Register...

[Cherie]

George,
What StemGenex is doing is a procedure that is not approved for use by the FDA and has very little to recommend it other than company "research" and articles. You can read about this procedure at Only registered and activated users can see links., Click Here To Register.... The cost is $12,000-$15,000/treatment that is not covered by any insurance and it is only done in three locations in the USA. You can actually buy the kits to process the cells online for $2500/kit which is, as I understand it, the credit card down payment you have to make to schedule the procedure. I have now spoken to 6 MS patients that had the procedure done. None have reported problems with the procedure or recovery but unfortunately, none seems to have been significantly helped either. The procedures talked about in the link Agate posted are not this 'for profit" procedure or company but use different process that does seem to be effective in some people with MS. To see where trials are in your area, go to Only registered and activated users can see links., Click Here To Register... and search for Multiple Sclerosis and Stem Cell

[Cherie]

This link on a different manner of stem cell therapy was posted this morning in MedPage Today medical news headlines.

Only registered and activated users can see links., Click Here To Register...

[SalpalSally]

Thanks Cher. It sounds like another kill ya or cure ya - not, therapy.

[SuzE-Q]

I agree, Sally...honestly, are they trying to cure us, or kill us?!!?? Suicidal thoughts as a side effect?!! Are they going to start pushing us out in front of traffic next to see if that helps too?

With the deterioration and disease progression at year 4, is it really any better than, say, novantrone, which works while you do it, but seems to wear off once you stop? And that doesn't even include the HCT transplant, just dampening the immune system! I wonder what the other Grade 3 + 4 events were that were experienced...a huge side effect profile, looks like almost 1/2 were negatively impacted in some ways, and disease activity continuing on MRI.

I thought 10 year studies show that people do reasonably well for that length, these people only have MS for 5 years when the study starts, and many don't seem to be doing all that well at Year 4 of the study. And they call this a "win" for HCT??!

[Cherie]

One of my college friends is now a leading stem cell researcher. His work is mainly targeting diabetes and heart disease since that is what he lost his parents to. He says that things work really well in the lab, in the animal model but fail once the procedures are applied to humans. Maybe they just haven't figured out what the difference is between the lab and the human response.