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Old 06-19-2014, 12:59 PM #11
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Originally Posted by mrsD View Post
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.
Thank you MrsD!
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Old 06-19-2014, 07:30 PM #12
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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.
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Thank you MrsD!

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Old 06-20-2014, 08:10 PM #13
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Default 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.
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Old 06-21-2014, 02:59 PM #14
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Originally Posted by Nervous1 View Post
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.

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.

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
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!
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Old 06-23-2014, 11:26 AM #15
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Yes, the doctor in Russia would agree to treatment, but there is a waiting list.


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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!
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Old 01-16-2015, 02:33 PM #16
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Originally Posted by lbxm View Post
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!
What about the autologous from your adipose tissue that is given back to you in your blood?

TIA
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Old 01-16-2015, 10:18 PM #17
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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.
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Old 01-18-2015, 01:53 PM #18
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Default 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.
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Old 01-19-2015, 04:52 PM #19
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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
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Old 01-19-2015, 04:57 PM #20
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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?
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