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.