Loony03 wrote:Hello - this is my first post on this forum. I was dx with PPMS back in 2008. I had an issue with what seemed to be a growing spot in my eye that was affecting my vision. I went to see an ophthalmologist, then neuro, and then the dx. I'm in my mid 30's and at this point I could live with my other MS symptoms, which are pretty minor yet. But with my declining vision, I'm on the path to being unable to drive, work, etc. (Didn't want to be long winded but wanted to give a little background.) Does anyone know of any stem cell treatments that have been done to regenerate the optic nerve and restore vision?
Thanks!
Hi Loony03,
Sorry for the delay in giving you feedback on your question. No doubt everyone reading it would like to give you uplifting information. And certainly I don't want to be a downer. Based on your description your situation is somewhat of a difficult case. In the case of RRMS you likely could look forward to some remitting improvement. But as I'm sure you are already well aware, PPMS cases usually don't see much improvement, if at all, making such cases the most difficult to treat and the least likely to respond to treatment. Regardless, even though there is no officially FDA-approved drug for PPMS, if I were in the same situation I would likely try to get on some form of immunomodulator as soon as possible. Perhaps Fingolimod or Tysabri. There's always a possibility it "might" be beneficial, although no gaurantee.
With that said, and onto the subject of stem cells. . . . . . There are two different approaches to stem cell treatment. The first is a hematopoietic stem cell "transplant" (HSCT) that uses chemotherapy to wipe out the aberrant immune cells that are the underlying cause of the nerve damage from MS. (Transplants are currently in phase III trial and have shown very good repeatable clinical results necessary to prove that it works by halting the underlying MS disease process and has benefit in the majority of treated-patients.)
The other approach is to do stem cell "infusion" (that does not use chemotherapy) to try to effect nerve repair (which is what I think you may be looking for). HSCT "transplantation" is a well-developed medical procedure and I would think completing it necessary to preserve existing nerve function (since "infusions" cannot stop the underlying disease activity the way transplantation can). The clinical efficacy data on "infusions" is quite limited and as of today there is nothing that has been repeatably shown to work (It is currently only in phase I trial in a small population to establish safety, not efficacy.)
If I were in a similar situation that you describe I might first try to stop the disease activity first with a stem cell transplant and then follow it up with a stem cell infusion as an "attempt" to repair some of the nerve damage (if you don't first stop the disease then any "repaired" nerve function would be open to further damage from an out-of-control immune system). Unfortunately doing this approach would be quite costly in terms of money, time and effort.
If one were not so inclined to undertake such a two-step treatment approach, you could always attempt just the stem cell infusion approach and take the chance that it "might" have a beneficial effect. If you were going to do so then you should skip all the dozens of facilities (such as Panama that provides useless therapy) where they re-inject unmanipulated mesenchymal stem cells (MSC) in very low populations back into your body. Instead I would seek the protocol that they are doing at the Cleveland Clinic (phase I trial) where they are taking your own MSC's and then replicating them to very high population levels and then doing intrathecal & IV infusion.
Clevland is doing 2 million MSC cells per kg body weight. But Prof Shimon Slavin can do basically the same procedure at CTCI in Israel replicating approximately 1 million MSC cells per kg. I don't know how much it cost (I "heard" around $25K), and it will take them several weeks time to do the necessary replication process. It seems that there would be little downside to Slavin's MSC therapy. It might be worth (an unproven) try. That would be up to you.
Slavin's info is on the lower half of this page. . . .
http://themscure.blogspot.com/2011/06/g ... -have.html
And as I also mention in my blog. . . . The following video presentation by Dr. Dimitri Karussis who works, or worked together with Prof. Slavin describes the science behind the various treatment protocols they provide, including the MSC therapy (which unfortunately is not (yet) strongly compelling data). . . . .
http://www.informed-scientist.org/prese ... -sclerosis
Good luck! and my sincere best wishes for your good health. I hope you will keep us updated on if/what you do.
George
