Stem Cell Transplant
 

Has anyone had an experience with autologous stem cell transplant or have thoughts on this? I've read positive articles but where are the success stories? I know that if it were any of us here, we would be sharing our experiences.

Other than the cost, I do not see any drawbacks.

Different names for it.

http://www.mayoclinic.org/tests-proc...n/prc-20013565

There are different types but I am specifically referring to autologous stem cell transplantation for PN.

:Hum: That is mentioned in the site I gave. Autologous stem cells are from your own body. You probably already know this. I did not. Learn something every day. :)

Ah yes, thank you Kitt. ;)

Have you seen/read anything about stem cells being used for PN specifically?

Doc

Are you are talking about a bone marrow transplant using your own stem cells. If that's the case then big downsides are death, secondary clonal diseases, toxic drugs to kill your immune system, antibiotics, antifungals, antivirals to prevent or treat infections during the time you have no immune system...and the list goes on.

Even though the autologous stem cell transplant does not carry the risk of graft vs host disease, it is still very hard on your body. And if your PN is idiopathic I can't see anyone agreeing to do one.

Has anyone done stem cell transplants for idiopathic PN? They have done transplants as well as high dose cytoxan for those with other types autoimmune diseases. But that is usually after all other stuff has failed them.

John went through high dose cytoxan for Aplastic Anemia which basically wipes out your immune system but spares some of your own stem cells so they can regenerate the bone marrow. He ended up with PN and other collateral damage.

They have come a long way with transplants but it is still very risky.

Found this one
 

Stem cells are being looked at for dorsal root damage that fails to self repair due to a genetic defect. Seems autologous cells would have the same defect? I don't know the details about stem cells.

Our MG board has a member who had the bone marrow reboot.
And this topic gets some discussion on our MS forum now and then.

There are several types of PN that may respond, but they are all slightly different. So how the stem cells would be applied --where they would be injected-- seems a big factor.

Somewhere here on the board I have a paper I linked to about stem cells for PN....

I am looking now for that paper... found this along the way:
http://www.sciencedaily.com/releases...0221125018.htm
This is interesting.

Also this:
http://www.sciencedaily.com/releases...0401102122.htm

http://www.sciencedaily.com/releases...0226135424.htm

I can't find the specific article right now... but it involved stem cells as a proposed treatment for dorsal root damage,that the patient cannot repair themselves due to genetic reasons for a lack of a specific enzyme.

Stem cell research seems to have alot of ups and downs, with many failures. So I don't think it has reached a level for general applications for patients, yet.

There are companies performing autologous stem cell transplantation on an outpatient basis. The procedure is indicated for several conditions: Alzheimer's, Parkinson's, MS, Autoimmune PN, Type II Diabetes and more. The procedure involves harvesting a patient's own stem cells extracted from the abdomen (mini-liposuction procedure), laser application and systemic reintroduction. That's my understanding of the procedure anyway.

It is the Autoimmune PN indication that got my attention but I could not locate supporting data so I contacted one of the companies and they said the PN improvement has been when it is a secondary condition and that the results are very good. I was intrigued by this since those of us with IPN do not know what our primary condition is (although some of these unknown cases are probably autoimmune related) however I am unable to locate the data which likely means it does not exist. I thought to check here with others first before dismissing it .

Thank you MrsD! :)

beatle,

I have looked into this as well. It is possible for stem cell therapy to help someone that has autoimmune mediated neuropathy. But, it is not without a certain amount of risk. I have personally corresponded with Dr. Burt via email about whether or not stem cell therapy would work for autoimmune SFPN, but he would not answer that, he would only say that they were not offering treatment for autoimmune SFPN at this time. Here is a link to Northwestern and Dr. Burt's stem cell research. http://www.stemcell-immunotherapy.org/about.html
On the other hand, I also contacted a Russian doctor in Moscow about stem cell therapy and he said that it would work for all types of autoimmune diseases, but he had only treated CIDP based neuropathies, just like Dr. Burt.
http://sixtyminutes.ninemsn.com.au/8...ical-treatment
From my research, I have read that there are two types of Autologous haemopoietic stem cell transplantation, myobelative and non-myeloablative. Myeloablative completely kills your immune system and there have been fatalities. Non-myeloablative kills almost all of your immune system and the doctor in Russia has not had any fatalities out 250 + patients.
So, in my opinion there is promise for this therapy for autoimmune neuropathies, but to my knowledge only CIDP has been proven. If you can stop your body from attacking the nerves, then you may have some chance to heal.
My .02
N1

Thanks N1! This helps a lot.
 

There are risks with everything but we want the best chance for improvement with minimal risk potential. I have always said (past two years anyway) that I would try anything reasonable for a decent chance of improvement. I would sign-up for a clinical trial in a second if there was hope and it was relatively safe. What I can't afford though is to be worse off.

There appears to be sufficient evidence to support the use of stem cell therapy for PN but it seems premature at this point to know which therapy is right and how it should be executed.

I hope we see more clinical trial results soon.

Nervous1, did the Russian doctor agree to treat you?

I developed PN after a flu shot last year but so far the doctors don't know what type it is. It is not CIDP or SFN. The only thing we know for sure is it is autoimmune because of the post vaccination onset. I am trying to figure out if the stem cells transplant is a viable treatment for me.

Thank you!

Yes, the doctor in Russia would agree to treatment, but there is a waiting list.

What about the autologous from your adipose tissue that is given back to you in your blood?

TIA

I have been looking into this type of stem cell transplant, and so far can only find "scam like" clinic places offering it --not real hospitals.
There are some clinical trials out there, but all of the ones I have applied to so far are accepting only confirmed cases of ALS at this time.
I have also gone to Chicago, met Dr. Burt and applied for that trial--but my Neuropathy is considered to be from "atypical" cidp and they were accepting only typical cases.
I am hopeful that our cure for nerve damage, no matter what the cause, lies in stem cells,we just aren't quite there yet.

stem cells
 

I found a place that does it and has an IRB (Institutional Review Board) and have been in short chats.

Since mine (SFSN) started after levaquin, abdominal surgery, and multiple interventions, I am not keen on liposuction in my stomach.

I am considering hyperbaric oxygen at this time.

It would be great to hear from anyone who has done it.

This is the parent company (not endorsing) that I found:

http://www.stemcellrevolution.com/

Most of you have probably already looked at this anyway.

Take care.

I have looked into this to and i am still investigating.
First of all i think the risk are minimum we only dont know what long term effects are but let me share with you what i found.
To dose with a auto immune neuropathy i think you more change if you would do a stem cell therapy.
I think it will be clear to you if you have watched these videos.
At the end of these videos and learn

Roberta F. Shapiro DO, FAAPM&R: “A New York Doctor’s Path to Panama” – A Stem Cell Therapy Video Lecture

https://www.youtube.com/watch?v=Hq0vON_F-kU

The Science of Mesenchymal Stem Cells and Regenerative Medicine - Arnold Caplan PhD (Part 1)
https://www.youtube.com/watch?v=9AyvNTiRWeY
watch all the the other parts to



Non-controversial Stem Cells: Rationale for Clinical Use: Neil Riordan, Ph.D. - Miami, FL
https://www.youtube.com/watch?v=G-KxNelfQUc&index=7&list=PLwXA4HJjl4aLL1flKKm6LeYOQi rSwu_9k


Neil Riordan PhD - Stem Cell Therapy for Spinal Cord Injury (Part 1 of 5) || Stem Cell Treatments
https://www.youtube.com/watch?v=xZya...Swu_9k&index=8watch all other parts to

There are many more videos about the talks Neil reirdon is doing and they are very educational i would say try to see them all

I also found a a preliminary report on stem cell therapy for neuropathic pain in humans its a very detailed test but i have only a pdf of this so i dont know how to this you.Any ideas how to distribute this document?

You could just open the url from the pdf in the browser and copy and paste the url from there to here. Under that just put the title of the paper.

Is it this one?


http://www.dovepress.com/articles.php?article_id=16748

A preliminary report on stem cell therapy for neuropathic pain in humans
Vickers ER, Karsten E, Flood J, Lilischkis R

There is an option at the bottom of the abstract to download PDF and Full Text HTML

Yes Lara that is the one

Some of Neil Reirdon talks its very educational i recommend watching everything you can find on youtube


Umbilical Cord Stem Cells: Regeneration, Repair, Inflammation and Autoimmunity - Neil Riordan PhD P1

https://www.youtube.com/watch?v=vxoC90148pE

Umbilical Cord Stem Cells: Regeneration, Repair, Inflammation and Autoimmunity - Neil Riordan PhD P2
https://www.youtube.com/watch?v=oRfkU2HNVdk

Stem Cell Research & Therapy Explained - From MS to Spinal Injury
https://www.youtube.com/watch?v=7qpq...Chf_kJ0BSnP_MV

Neil Reirdon youtube videos
https://www.youtube.com/results?sear...y=neil+reirdon

Chronic Pain is Relieved by Cell Transplantation in Lab Study
a case study with mouse


http://www.ucsf.edu/news/2012/05/120...tion-lab-study

I do think our best chance of regeneration will be some type of stem cell therapy.

But when?

I wish dose researches stopped with researching and came up with a cure.

There are allot of clinical trails going on with Mesenchymal Stem Cells
But none for polyneuropathy but allot for MS.
I think that polyneuropathy is not taken serouisly

https://www.clinicaltrials.gov/ct2/r...tem+Cells&pg=4

Autologous Stem Cells Reverse Rare Peripheral Neuropathy

http://journals.lww.com/neurotodayon...pheral.11.aspx


This is a article from Allan Basbaum by ABCnews
http://abcnews.go.com/blogs/health/2...-pain-in-mice/

-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

I wrote Allan Basbaum ...this is his responce


Dear Professor Allan Basbaum ,

A couple of weeks ago i came across a youtube video about "Chronic Pain is Relieve by cell transplantation in a lab study".
My thoughts where ..at last somebody is taking neuropathic pain seriously.

Since 6 years I have a toxic mild polyneuropahty and I am very pro active searching for a therapy to heal my illness.
Not so long ago i found a youtube video with a talk of Professor Arnold Caplan in Panama.
Professor Arnold Caplan talk was a very informative and it gave me hope that stemcell therapy could be a very good option of healing my nerve damage.
I also found a article in a Australian pain journal where stemcell therapy was used to help relieve pain the name of the article was "A preliminary report on stem cell therapy for neuropathic pain in humans".

I don't have much pain anymore but i numbness in my hands and feet this is causing allot of discomfort.And this numbness is slowly getting worse.
I am exercising to keep myself in good shape.

Do you have something that could help me?

Best regards,
----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Dear Mr. XXXX,
There is not question that there is promise in the use of stem cells for the treatment of pain (and hopefully an host of other neurological conditions). But I strongly believe that we are not ready for clinical application. I am not convinced that reports of stem cell use in humans are of any benefit and urge you to be cautious. Our hope is that the approach will bear fruit, but we are only now studying the value of human embryonic stem cells modified to take on the properties necessary for pain control.
Regards,
Allan Basbaum

My Trip To Bangkok: Stem Cell Treatment [Journal]

http://www.tinnitustalk.com/threads/...-journal.1884/

http://www.stemcellpioneers.com/

Stem cell injection could cure diabetic neuropathy
 

I hope they are getting somewhere...

http://www.diabetes.co.uk/news/2015/...-90691986.html

I have read simular articles ,suposanly there are side effects because living tissue is injected but till now i have onky heard of one case with a nausty side effect.

The question why is there not a trail taking place where patient are in jected with adipose stemcells

I dont know if this is real or fake this could be posted so that the company so that the company can make more mony

https://www.youtube.com/watch?v=GwlhnGofe3c#t=21

The good news: neurological disorders are getting a lot more attention these days. Unfortunately, it will take longer than we want.

When an effective treatment does come along though, we will know.

Again something new i dug up

https://www.facebook.com/PatientsForStemCells


Interview 108 is amazing
http://www.spreaker.com/show/healthcare-elsewhere

David Granovsky-The Stem Cell Blog

https://repairstemcell.wordpress.com/

Now we need a human study.
 

Stem Cell Treatment Shows Promise in Animal Model of Diabetic Neuropathy

http://www.hcplive.com/medical-news/...tic-neuropathy

I was skeptical reading it. At first I assumed his neuropathy was from CIDP, going by the title. Then it seemed it was possibly from diabetes?? Not that , that made a huge difference in the whole stem cell procedure, but just made me think the story might have been fictional for advertising purposes.
Also not a lot of actual information on the stem cell process itself was described. I don't know that I would call it absolutely painless either---tolerable but definitely not painless for me.
I think one has to actually visit the place and talk to the Dr. who would be doing the procedure to see if you feel comfortable and trust them. As patients, we can only hope they know their stuff and are actually separating the stem cells out of the fat tissue and re-injecting them appropriately.
I would be leary of places and Dr.s who promise results or claim to be able to cure anything with stem cells. Stem cells are a new upcoming thing, not even the doctors know how every individual will respond.

I would be very cautious about anything in that Web site.

As far as I can see from it, David Granovsky trained as an architect - he does not have clinical or biomedical science training.

When I have a problem with my hot-water system I get help from a plumber (not my GP).

When I have a health issue I get help from a member of my clinical care team (not a plumber).

Thank you all for this thread. Did anyone end up visiting or contacting the Panama clinic? I just posted my thoughts on the other stem cell thread. I know there's Northerngal, who tried one in the US.