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:

That is fine Beatle, I put it on here because I wanted others opinions.
I will come back here with any results. I am optimistic and hopeful, but also realistic.

Just wondering when the weakness and numbness began as it might indicate how long the nerves have been damaged. How long did you have just the tingling/vibrating symptoms for?

Also, are you saying that you haven't progressed since Aug 2013? That sounds like it was put out some how.

Vibrating and tingling went on for about a year before weakness started. weakness progressed slowly. I started using afo's for the weakness 2 years ago. Everything has stayed the same for the past few years.

sorry--I didn't read your question right the first time.
I stopped all treatment in August of 2013. I was on a 3 week IVIG regiman at that time. the only real way to know if I needed it anymore was to stop and see what happened.
I had already stopped progressing prior to that.

What about the numbness? When did that start. Hopefully some of these nerves get regenerated.

I think you said you never had the pain/burning right? Also, only legs, no hands/arms?

yes, only my lower legs are affected.
Upper legs,hands, arms, and proximal are all unaffected.
I have had the numbness for 3 years. That also progressed slowly. Not sure if you have numbness or are familiar with it, but it's very strange. The numbness is in my feet, stops at the ankles, yet I can feel If someone touches my feet, I can feel the pinprick and vibrating tool that the neurologists use.

Numbness is very subjective term to patients. To some it means total sensory loss and to others it means it just feels numb but without sensory loss. And anything in between.

https://www.dartmouth.edu/~dons/part_2/chapter_13.html

Do you have trouble feeling or does it just feel numb?

Good article :) My feet FEEL numb, but I still have sensory function. If I step on something I feel it.
My worst symptom from the neuropathy is the weakness. So it's possible, what I'm feeling as numbness, is the result of weakness/muscle loss. It causes the feet to have a heavy floppy feeling to them.

Link to a previous NT stem cell thread
 

Thanks for this.....I had forgot about this thread. The place I'm going through is the one mentioned by Baba.

Have you made up your mind yet to what clinic or hospital your going?

yes....I am going through Cell Surgical Network. I found it through a link Baba put here on NT. They do the procedure in many locations for different conditions.
Coming right up...next week :) I will let you know how it goes.
Although it would be nice to feel something right away--I'm sure it will take a while to know if it did anything or not.

Why the Cell Surgical Network?
are you also planning to make a blog about experince?

I went with them because their stem cell procedure seems to be following what others are doing outside the country. I feel more comfortable getting it done in the US.
The doctor who I met with (DR. Welter) seems knowledgeable and excited about the future of stem cells.
It makes sense to me that he is taking these these stem cells from my abdomen fat and injecting them directly into the damaged nerves in my calves in the hope that they will know what to do and help regenerate the axons.
Note I said " in the hope" I don't know and the Dr. doesn't know what will happen. It has not been done enough for peripheral nerves( at least not that I am able to find) to really know yet how it will work.
yes, I will post (good or bad) the procedure and what happens from it

Bravo Northerngal!
Can't wait to see your posts!
Godspeed!

Northengal,,
I cam across this site i havent read it because i am at work now but you should check it.
It looks that adult stemcells responces well with how have a autoimunne or toxic neuropathy

http://www.innovationsstemcellcenter...al-neuropathy/

Thank you for that Jurgen, that was an excellent article :) It explains the procedure exactly as I am getting it done.
With my date getting close (Apr 8th), even though I am excited I am a little nervous too--so it was nice to read that.
My neuropathy is considered to be immune related due to an unexplained antibody and because they can't find any other reason--but I don't fit the "typical" CIDP criteria (so I guess I'm halfway between immune and idiopathic)
The doctor doing my procedure did tell me it may need to be repeated, as the article mentioned, and thankfully gave me a decent price for any subsequent treatments.
Let's just hope these stem cells know what to do once they are injected in there.

As far as CMT -
 

goes, they are testing laborator models for CMT1A, 1B, 2A, 2B and 1X. A long way to go as far as CMT goes. This information is for those who have a type of CMT - and there are many types of it. They are doing research all of the time.

I don't know a lot about CMT Kitt----are they doing stem cell trials for it?
I did try to reach Dr. Michael Shy once out of Iowa who was doing some clinical work that I wanted to participate in. After several attempts with no response from him or his team I gave up. He specializes in CMT. I just assumed I did not get a response because I did not have a CMT diagnosis.

Kitt can You explain the models To i gave no Idea what You mean.

Northengal yes i think You need To do This a couple of Times Dr.shapiro talked about This in het Video.
What mark knoefler Said in his book stemcel is that it is very hard a stemcell To survive in the human body so making engrftment very difficult thats why You need To under Go This procedure a couple of Time.
Van i ask You what the cost are?

All I know is that they have developed laboratory models for several types of CMT.

They have developed laboratory models for several types of CMT. Then I assume they will do trials.

I am very familiar with Dr. Michael Shy and his team. He is one of the experts when it comes to CMT.

Jurgen it is $6500.00 for the first treatment and $3000.00 for any repeat procedures.
I think it might depend on how large of an area they are treating. In my case they need to harvest enough stem cells to treat the nerves in both of my lower legs.
For example, the people getting hair restoration at that same place, pay $2500.00 since they only need to harvest enough to cover their scalp.
Fortunately there are not a lot of travel costs to have to add to it, MA is within driving distance for me.

Looks cheap to me i have read a blog a member of the tinititus form how spend 40.000 dollar

The first clinicaltrials that i discover to treat Chronic inflammatory demyelinating polyneuropathy i

https://clinicaltrials.gov/ct2/show/...opathy&rank=29

what that article is referring to is completely different than what I am doing. That is a stem cell transplant which involves depleting the immune system. I did apply for a stem cell transplant a few years ago at northwestern with Dr. Burt.
I do not need a stem cell transplant now because with the use of IVIG, Rituxin, Plasma exchange and prednisone there is no longer an attack from my immune system.
The adipose stem cell THERAPY is a lot different then what is being done in that article. Usually in transplants the stem cells are derived from bone marrow not adipose tissue.

I can see where all the uses of stem cells get confusing. There are so many trials, and new info coming up all the time regarding uses for them. I will try to explain it a little better-----but keep in mind, by no means am I an expert in this. I am just always researching possibly ways to regenerate my peripheral nerves.
The use of stem cells for cancer and for "rebooting" the immune system like in the CIDP trials involve immune suppression drugs as well. Once your own immune system is wiped out you are injected with your own(or in some cases, not your own) stem cells to start a new one.
Stem cell treatment/therapy seems to be used more for regenerative purposes. The stem cells are your own and when they are given back to you the location is based on what they are needing to regenerate. They are given back through IV for some conditions, like a stroke.
In my case, my neuropathy has not got worse in over 2 years. My Dr. feels there is no more attack on my nerves from my immune system ( due to previous treatments). what I am left with is axonal damage that is not regenerating on it's own.
This is why I want to have the stem cells injected directly into my damaged nerves. There is no damage coming from my spine, my brain or my immune system, if there was then it might make more sense to have them through IV where they get into those areas.
hope that explains it a little better without getting into a novel length post :)

northerngal: well, like the others, i can't wait to hear how this goes. my case of CIDP sounds pretty much like yours, numb feet and atrophied leg muscles and all. (as of two months ago, my fingers started getting involved in the numbing, tingling game. oh well.)
i got in touch with Dr Burt a while ago. his people felt i'd be a good candidate for the treatment, but i never went out for a meeting or followed up. after several years of relative calm, my condition has been getting worse recently, so i am back thinking about these things.
let me ask you this. let's say Dr. Burt had accepted you ($$$$$) and then this other therapy came along ($$). would you go with stem cell replacement right away or start with the less expensive, less invasive, less time-consuming procedure and see how that works first?

Your posts are very helpful.

Cheering you on:D

Wishing you all the best Northerngal. It would be incredible for you - and hopefully many others, if this treatment works :cool: