stem cell therapy
 

I am scheduled next month for stem cell therapy---not to be confused with a stem cell transfer,( in which stem cells are taken from your spine, harvested, your immune system depleted then you start over with a new immune system)--I have gone to Northwestern in Chicago,met with Dr. Burt, but was not accepted in the trial.
In stem cell therapy, the stem cells are taken from your own adipose tissue, processed with your own plasma then injected into the area needing regeneration--in my case, my lower legs. I know it's very controversial, not yet fda approved, and beware because--yes--there are many places scamming and claiming they can "fix anything".
My thought is, no matter what the cause of the neuropathy was....as long as there is not an ongoing attack on the nerves, that possibly the stem cells could help regenerate the damaged nerves??
I am having this procedure in a few weeks and would love some feedback, opinions etc. If there is someone on here who has tried it please share your experience.

I can't say about here on PN, but there has been a poster on MS and MG here who had the bone marrow reboot...stem cell treatment.

Where I live, Gordy Howe just had a stem cell procedure done, using research from San Diego, but performed in Mexico...He is doing very well so far:

http://www.nhl.com/ice/news.htm?id=751450

I am sure many here will be eager to hear about your treatment, how it went, etc. So I do wish you the best and if you can please return and share your experience.

Best wishes.

I have not done it but i am reading about it allot and there is some good information on the internet.
Currently i am reading Paul Knoepfler's book Stem Cells insider's guide.

A preliminary report on stem cell therapy for neuropathic pain in humans
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4020887/

Did you do your homework?And i would love to hear from you how it goes

thank you Mrs. D for the encouraging words. :)

I have been reading a lot on the process,following any info I can find info on pub med and other reputable sites and reading a lot of forums to see if it has helped others.
Where we all have such different symptoms and there are so many different reasons for neuropathy it is hard to find people in our exact same situation.
I spent many years searching for a reason for my neuropathy--and the best I can get is "atypical cidp" or some sort of "acquired inflammatory neuropathy".
When I finally stopped focusing on how I got it, and instead on how can I try to regenerate the damaged nerves I began researching stem cells.
The place I chose was through a link someone on here gave me--cell surgical network. There is no guarantee at all that it will work, and the Dr was honest about that. He took the time to go through my history.
There is really no risk to the procedure, and after all I have endured with this neuropathy I figured what is one more thing.

Good luck on this!
I was considering these folks and procedure and tried the hyperbaric oxygen therapy first-had problems with ears and pressure and had to stop early on.
I was told since I have small fiber, it would be given intravenously.
PLEASE make sure you keep up with us and share what you feel comfortable sharing.

I almost went through a similar technique offered by StemGenex about a year and a half ago. If I recall correctly, it involved a little bit of abdomen liposuction, harvesting the cells...a laser was involved as well and they subsequently inject the cells back through the bloodstream. The only reason I didn't go through with it was because I could not find anyone else that had done it with success. There were testimonials for other diseases but not specifically peripheral neuropathy. They too were honest that while they have had success with neuropathy as a secondary condition, they had not had any with my specific condition, idiopathic peripheral neuropathy as a primary condition.

I am all for being a pioneer in this cause. I would join most any clinical trial and donate my body to science for a cure but I know in my heart of hearts that if someone had done that stem cell treatment with success, we would've heard about it here by now and one after another, we would be going for the procedure and coming back here to report our positive results but to date, that has not happened. I do not want to discourage you but it is important to be realistic. If you do choose to go through with it, like you said, there is probably not much risk. I hope that it does work for you and that you will come back and report your progress either way. After all, it seems very likely that a cure does lie in some sort of stem cell treatment.

Good luck!

The stem cells will be from adipose (fat tissue) most likely my abdomen, if they can't get enough there, there's always a little lower on the back side ;).
They need to collect a large amount of stem cells for the procedure. Supposedly we have a lot in our fat cells. The whole procedure is suppose to take around 5 hours. It sounds somewhat similar to what you described, except the stem cells are going to be injected directly into my damaged nerves, (peroneal &tibial,not sure if they will hit more or not)
I could not find any success stories exclusively for peripheral nerves either. My hope is that it is because not a lot of people have tried it.
The procedure seems pretty safe, I'm thinking the only thing I have to lose is $$, which doesn't thrill me......but if it DOES work, there is no price I wouldn't pay to have my old life back.

Did your CIPD begin with sudden numbness and weakness or are these symptoms more recent? Hoping this works for you and you get some regeneration of the leg nerves.

No, my CIDP started with tingling and vibrating. The weakness came after.
It is not typical cidp, because that usually includes proximal weakness. All of the doctors I have seen agree it's some sort of acquired inflammatory neuropathy or "atypical cidp".
I have had treatments with prednisone, IVIG, plasma exchange and rituxin. I have been treatment free since August of 2013. I really don't know 100% whether it just stopped progressing or whether there was an immune attack and the treatments put it out.
Either way the nerves are not regenerating on their own. so I'm hoping this stem cell therapy will help.

Please know that I support you and that it is only my nature to question everything.

I hope you have great success with it. I too have invested a lot of money in this, searching for everything from relief (e.g., a giant worthless Anodyne contraption) to the ultimate, a cure. I too would pay anything for that. I think you have the best chance of success with the cells being injected where the damage lies. In my case, that would be everywhere.

Please post your progress, positive and negative and know that we all support you. :grouphug: