Linter......I did travel to Northwestern and met with Dr Burt and Dr.Allen (the neurologist for the trial) in 2013 . I wasn't accepted because they thought I should try other immune modifying methods instead.
The stem cell procedure they are doing is pretty extreme. Your immune system is depleted with cytoxin then restarted with your stem cells. If my neuropathy was still progressing then I would call them and see if they would reconsider me. The progression would lead me to believe there was still an attack on my nerves.
Because I have not had any progression, I'm hoping the attack on my nerves has been stopped. So in my case now, I would not opt for the Northwestern trial. What I'm doing now is strictly for regenerative purposes and will not affect my immune system, it is much less invasive.
Hope that answers your question :)
There was a good chance my insurance (Anthem) was going to cover if I had been accepted at Northwestern. They won't cover any of the treatment I'm doing Wednesday, it is not FDA approved, not a clinical trial, and for regenerative purposes, not life threatening. So, I really don't have anything I can use to argue for it with them.
I haven't checked into the Northwestern trial for a while, but at some point, the original plan was to move into phase 2 and have some people receive a placebo. Maybe since it's been so successful they are not doing this anymore??? be sure to ask about that if you decide to go.

thanks for the response.

and, yes, the replacement is very invasive. it still think about it, but every time i do, i stop once i see the time commitment it takes -- ie, the amount of time i wouldn't be able to work. seems to me, best-case scenario is 4 months, worse case, a year or more. i just can't afford it, time-wise, as the type of work i do wouldn't permit me to be gone that long.

my CIDP is still progressing. i wonder what benefit your therapy would be, if any, for one such as me. got any ideas?

Linter.....My husband went through High Dose Cytoxan at Hopkins in 2002 for Severe Aplastic Anemia. It's a different protocol than the one at NW in that he did not get ATG and he did not get a re-infusion of stem cells. But they did wipe out his immune system with the 4 days of high dose cytoxan. It appears this trial is building on the success of the original treatment of autoimmune diseases with high dose cytoxan. Over the years it has evolved.

We too looked at the best case/worse case time frame and I would suggest if you go forward, to plan for the worst case and make sure that you have Long Term Disability insurance in place now if at all possible. We were fortunate to have our healthcare cover all of his medical expenses and he had short term and long term disability insurance through his employer. LTD payed about 60% of his salary.

The good thing is that your bone marrow functions really well and recovery of your blood production will most likely happen quickly.

Linter....the procedure I had done today does not affect the immune system.
If you have a confirmed diagnosis of cidp that is progressing, you would need to do something that will put out the attack on your nerves. Have you tried prednisone, IVIG, Plasma exchange or immune suppressants? When I went to Northwestern to inquire about the sct, it was a requirement that I had already tried at least two of the above.

NG: how'd the procedure go????
I tried IVIG several times, with no response. My doc is totally down on steroids for me. I've tried nothing else. When I spoke to Dr. Burt's office, they said that was okay.
MY CIDP is progressing, however, so I guess I'm not a candidate for what you're up to. Problem for me with SC replacement is the time commitment. I just can't get up to a year off from work. Sigh.

Marlene: thanks for sharing. No, I have no long-term or short-term disability insurance. Another sigh: sigh.

I understand completely.....had I been accepted, the amount of time required to be at northwestern would have been difficult for me too. I run my own business, so would have made it happen, but it would have been hard.

My stem cell therapy yesterday went well. They extracted 3 vials of stem cells. 2 were injected into my lower legs, and I did end up getting one vial IV ( I wasn't expecting that, but they feel it helps to get some into the bloodstream like that).
The injections into the legs were painful but not intolerable---I would go through another treatment, if this one works and another is needed. As a little benefit for the pain, my tummy is quite flat after the procedure ;).....the adipose fat they used was from there.

The SC therapy I was going to do last year was the IV infusion since my PN is everywhere. I will probably do it eventually but I need some positive data to support it. Have you found any?

Even though your PN if different than mine, I am very curious if you experience any relief from this.

Beatle, I did not find a lot of data specific to peripheral neuropathy.
Stem cells are being used successfully for other regenerative things. Neurology has so many different conditions and is the hardest to measure in terms of progress or concrete data to support a new treatment.
I will post any results I have, good or bad. Even with that, it doesn't mean it will or won't work for the next person.

Linter, what I meant to say in an above post ....is the treatment I had doesn't SUPPRESS the immune system. Didn't want to cause confusion---as I'm not sure whether it AFFECTS it in any way or not.

What does your neurologist suggest for you to stop the progression? Have you tried plasma exchange? I don't know for sure if what I had done works or not on stopping progression of CIDP. I haven't read anything supporting that it does. In my opinion, from what I have researched, if I were in your place and still progressing( with it being CONFIRMED CIDP) I would try a immune suppressant next.

I am aware of the positive results associated with cell therapies and neuropathies and I hope your results are among the successes Northerngal.

Thank you Beatle :) I am optimisitic and hope it will work, not only for myself, but to give hope to others affected by neuropathy. It would be nice if this works and is one day a standard procedure covered by insurances.

hello,

Is there any stem cell therapy for idiopathic SFN? (or what I think may be drug or trauma induced). I will go anywhere in the world. I am not the best googler and I have found very little on SFN and stem cell therapy. I need to find something/anything that MAY reverse this horrific beast that has ravaged literally every part of my body.

My neurologist has basically given up. No, I have not tried plasma exchange; I haven't even heard of it, so it's something I will have to look into.
By "immune suppressant", what do you mean exactly? Is that what the plasma exchange does?

Plasma exchange is removing your blood...putting it thru a machine which removes the antibodies that are in abundance, and putting the serum back into you. It is a long process --takes a day--and expensive. It used to be the only treatment for GBS, and some MGers get it still. But is used less often since IVIG became available.

Its official name is plasmapheresis.

Thanks. And is it an immune suppressant-type treatment?

Not exactly. I will remove the current antibodies in the blood, but does not stop the bone marrow from making more.

I don't know if all antibodies are removed or only those of a certain size which they know in advance. It is possible it removes antibodies from previous vaccines too. But you would have to look that up in more detail.

Linter, PE was used for me for 5 sessions. It is suppose to remove antibodies as Mrs. D described. It is a lot more invasive than IVIG. I only did it the one time 5 exchanges in 10 days. Some people can do it in less days, but I had to wait a day between each one. My BP dropped too low.
I'm not sure what the circumstances are for your cidp or any other health conditions you may have. The treatment I received may or may not be good for you. But it will at least give you some ideas to discuss with your neurologist.
My treatment for cidp went in this order: 1. IVIG( 2gm per kg every 12 wks ) 2. IVIG (same dose) every 6 weeks 3. added prednisone (60mg) with the 6 wk ivig 4. plasma exchange 5. rituxin 6. ivig 1gm per kg every week for 12 weeks
7. ivig 2gm per kg every 3 weeks. My next step would have been one of the immune suppressants (imuran, cyclosporin, cytoxin) In Aug of 2013 I stopped the IVIG and haven't progressed since then.
I hope this helps and that you find something that will stop the progression.

Also wanted to add....how many neurologists have you seen? My original neurologist was a small place in ME with no cidp experience.
I immediately changed to one at Lahey in MA with experience who started the ivig right away. ( Still go to her). From there I flew out to Mayo in MN to see Dr. Dyck.
Then met with Dr. Burt and Allen at Northwestern in Chicago to inquire about the SCT trial. and then Dr. Gorson in Boston MA (still see him too)
My treatment was from recommendations by these 4 different Dr.s/hospitals. I was fortunate to have a neurologist who was open to others ideas and willing to try them.
If you feel you haven't had a vigorous enough treatment plan, maybe another opinion would be beneficial.

hi northerngal,

looking up stem cell stuff... Dr welter that you mention seems to have a specialty in hair loss. Has he done treatments in PN before?

Just Wondering Northerngirl
 

Do you have any updates on how the Stem Cell treatment is working? Haven't seen any posts from you in a while, and I'm hoping everything is going well for you.

Dr. Welter is a family practioner in Attleboro. MA. He does stem cell therapy there as well. He specializes in SCT for hair loss. The process of extracting stem cells from the adipose tissue is the same whether for hair loss or other things.
The difference would be in re-injecting them. In my case I was given one vial of stem cells by IV and the other two vials were injected into my lower leg nerve area (both legs) since that is where my nerve damage is.
I have noticed some sensory changes, which could be because the stem cells affect inflammation. I have not noticed any strength/motor nerve improvement yet. This is my major concern and what I hope improves. It is still early, it's only been 4 weeks. Nerves heal very slowly, even if the motor nerves are improving, I won't know it until they reach a targeted muscle. I am optimisitic, hoping to gain some improvement from it. I also realize stem cells are still in the experimental phase, even the doctors don't know how or if we will respond.

We have an MD here in Los Angeles area who is a surgeon, but changed his direction and went to Prolotherapy, PRP and now Stem Cells for JOINT regeneration.

I had dextrose Prolo in my shoulder over 5 yrs ago and got 3 yrs of pain relief...could use it again.

The PRP and or Stem Cells would be MOSTLY for my knee and foot/ankle OA issues.

There are no guarantees as he reminds people, he is on the radio with call ins on the weekends...so many people in pain, failed surgeries, it goes on and on.

These injections are not covered by any insurance, so for many it's very difficult to do t his....more than one series is often needed....He claims people stop after one series of PRP (Platlet Rich Plasma) and claim to not get help.....most likely due to funds....the rich or very comfortable can do these....many athletes are doing them.

jointrehab.com is his link.

getprolo.com is a link for the U.S. practioners


PRP runs about $850+ per session here in Los Angeles area. Stem Cells over $1500 per session.


Then there is Prolozone which is oxygen/ozone injections, these run $200-$600 depending on the "giver" of them....

If money were no object for me, I'd have gone with PRP for my knee months ago, I want no surgery....hip replacement was too much to last me a couple lifetimes...


Acupuncture can do a lot of good...I need to go back to it...I've fallen off doing this ancient protocol.

Listening to the MD today on the radio, he does the above work that I mentioned. A much older man called in, he said he was 89 and was in WWII...anyway, he was praising stem cells he is having done for his knees. All it takes is money.

I am not holding my breath for insurance to pay for this work any time soon, maybe it will happen for the younger folks down the road.

stem cell therapy update
 

Update on stem cell therapy done on April 8th : First I want to mention that the place I had it done is now referring to "stem cell therapy" as "regenerative medicine", which I think is great, it will lessen the confusion between stem cell THERAPY often used for regenerative purposes and stem cell TRANSPLANTS , often used for cancer, immune disorders etc.
Since having the therapy I have had a reduction in the numbness and heaviness in my lower legs and feet. I have had sensations of tingling, pain, cramping or warmness where I previously only felt numbness. I know for some this might sound confusing, that I now feel pain. It is not a bad intolerable pain, it actually feels better than the deep heavy numbness feeling. It is not all the time, it comes and goes.
So my guess would be the therapy has had some affect on my sensory nerves. Could be that it somehow affected inflammation? I really don't know since there is not a lot of published information out there on it yet.
As for increase in strength, which was what I am really hoping to improve, I have not noticed a difference at this time. My hope is, that maybe the motor nerves are regenerating, but I'm not noticing, because they have not reached a targeted muscle yet?? I really don't know if they are or not, I can only wait and see.

Northerngal i think this is the first phase I saw once a video of somebody who had stemcell treatment and he had numb legs and with his second treatment he started to experience pain.With the thirth treatment his nerves where healed.

So i think your on the right track.

I HOPE SO!!! October will be 6 months, so I hope to do it again then.

Polyneuropathy improvement following autologous stem cell transplantation for POEMS syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/25878176

Successful autologous stem cell transplantation in a patient with chronic inflammatory demyelinating polyneuropathy
http://jnnp.bmj.com/content/72/1/127.full

The stem cell treatments in these articles are similar to what Dr. Burt is doing at northwestern in Chicago. I did go to Northwestern to meet with him, but did not qualify for the clinical trial as my case of cidp is considered "atypical".
This type is a lot more extensive than what I had done as it depletes the immune system and then "reboots" it with stem cells that were previously taken from your bone marrow.
The adipose stem cells used for mine are just taken out from fat tissue then put right back in where healing is needed--more of a regenerative therapy. great articles :) thanks for sharing

Hi Northerngal - I've just heard about all this and have been reading of your exploits in this thread. Wondered how you were doing now??

Hope you're well and many thanks!
Bal

my sensory nerves have improved since the therapy. My motor nerves have stayed the same. I am hoping to go in for a second procedure next month, and hopefully get some motor nerve regeneration.

Well, that's great news on the sensory nerves, I might have to look into this procedure. Really hope you get some help on the motor nerves next time!

A new interesting article about "Practical Considerations Concerning the Use of Stem Cells for Peripheral Nerve Repair"

http://www.medscape.com/viewarticle/588020_3

stem cell therapy update...I had my second stem cell therapy Dec 7th (reminder: first was 4/8/15) From what I have read 3 treatments is best for auto immune disorders, which is what my neuropathy is believed to be from.
My feet feel less heavy and less parathesia since this last treatment. I have had some different off and on sensory sensations in my feet (which are usually numb), an aching feeling, some tingling sensations.
I have not had any significant strength return in lower legs at this time, but this past week my feet have felt less "floppy" when walking around the house without my AFO's---hoping this will continue and is the start of some motor nerve healing??
Each treatment is suppose to do what it is going to do for 6 months--so it's too early to see what second one will do at this time.

Cell Surgical Network is a chain started by two plastic surgeons who admit their work Is "investigative," yet they charge $6,000 - $20,000 per treatment. I've read of no clear successes and two deaths.

I understand your frustration, and I wish you were accepted into a genuine trial, but please continue to do research......this does seem wild.....expert guys using the same sort of clumsy procedure for a myriad of problems.

My life as I knew it is over, but I am trying to adjust....my most helpful treatment is the yoga teacher/body worker/masseuse who comes over 3x/week. Pricy, but far cheaper than CSN, and I am actually symptom free for an hour or so afterwards....the window that keeps me going.....

My best to you.

yes, the doctors are very open that stem cell research/treatment is only in clinical trial stages at this time. I wish there was more information available on it. Between CIDP being rare and adipose stem cells being new, there isn't a lot of info out there on it :(

Okay, so there's this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4020887/.

It was posted on another thread here: http://neurotalk.psychcentral.com/thread205788.html. Then there is also this that was also posted on the same thread: www.cellmedicine.com and https://www.youtube.com/watch?v=Hq0vON_F-kU.

I'm looking more and more into this. It seems that a number of things are relevant to the effectiveness of this therapy:

1. Quality and number of the cells used. This also speaks to the safety of the procedure.

2. Nature of the cells used, from the patient or from a donor, and from what part. Here umbilical cord cells seem to be the most effective, short of using a fetus.

3. Whether chemo needs to be used also/in conjunction with the injections. This seems to relate to effectiveness rather than to it being the only option that actually works. It also seems to relate to how progressive or bad or extreme, however you phrase it, the patient's situation is.

Okay, so I'm really considering this. Why Panama? The clinic seems to have moved beyond used fat tissue, which appears to be more effective, and they also seem to have a state of the art clinic. But I'm just at the beginning of my research, and I don't make any hasty decisions.

The bone marrow, umbilical and host donors are different and more involved than adipose stem cell treatment. Those often involve chemotherapy and deplete the immune system-----Dr Burt was doing trials of these using stem cells from bone marrow and high dose chemo for cidp. He was doing it at Northwestern in Chicago.
I did not qualify for that trial as my cidp is considered "atypical". Do you have confirmed typical cidp--if so the trial may still be going on.
I researched for years before deciding. Whatever you decide, just be sure it is an actual hospital/dr office setting with qualified doctors. There were a lot of questionable places when I was looking.

Thanks, Northerngal. Excuse my ignorance, what's the acronym CIDP?

Also, the Panama clinic doesn't use chemo, I believe, but does use umbilical cord cells.

I believe CIDP stands for Chronic inflammatory demyelinating polyneuropathy.

Cliffman :)

chronic inflammatory demylinating polyneuropathy