I read somewhere yesterday that once you have an auto immune disease the immune system never reverts back to how it was previously. Does this mean there is no such thing as remission? I am interested to hear your thoughts. Thank you.
In my research this depends entirely on age and severity at onset. A client over 55 who has been trached and spent more than 4 months in hospital will more than likely have minimal myelin sheath growth in the last parts. Chances for spontaneous or otherwise recovery are very low although many say pray works as do other forms of positive thinking coupled with intense and continuous exercise regimen. Those younger stand a better chance of both complete remission.
The doctor you have all heard about? The one doing stem cell trials in Chicago, is having a 80 percent total remission record. Keep in mind that this is expensive and for those heavily into religion....he uses live stem cells, picked from toss away parts.
Bob
Myelin is supposed to grow back at a turtles pace. I would think regeneration of myelin is necessary for remission. Or does remission mean that there is no progress in the demyeliniation?
Bob,
The treatment in Chicago does not use stem cells from throw away parts as the main source. Most often the patients own stem cells are harvested from their own body, and reintroduced at a later time. I have first hand knowledge of this and hope that the correct information can be conveyed in the future.
BigMike,
Remission means the disease is not progressing.
Nerves regenerate approximately an inch a month, starting closest to the spinal cord. Therefore, healing foe hands and feet comes last if there is healing to be done.
HTH
He uses your own stem cells. They extract the stem cells from the patient before they bring your wbc down very low. Then they put your own stem cells back into your blood stream - then hoping for a reboot of your immune system. That way, if they use your own stem cells you won't reject them.
It's not a concept I recognise from my experience over the past 7 years.Recovery matters more to me.
The concept hasn't hit me yet.Recovery has.
I read that myelin remission is much slower: millimeters per month.
What is the name of the doctor or his clinic. I would like to read up on this.
tperri said:
Bob,
The treatment in Chicago does not use stem cells from throw away parts as the main source. Most often the patients own stem cells are harvested from their own body, and reintroduced at a later time. I have first hand knowledge of this and hope that the correct information can be conveyed in the future.
in Chicago, it's at Northwestern University - Feinberg school of medicine - under the direction of Dr. Richard Burt.
there's a Facebook group dedicated to this procedure. check it out & look under "Files" for all kinds of information about the procedure; where it's done- everything you need to know.
Hematopioetic Stem Cell Transplant - MS & Autoimmune Diseases
good luck.
Catherine,
Remission can be achieved but the question is how long can it be sustained. Remission is not cure. Everyone is different. Some have spontaneous remission and it lasts a long time. Some never achieve it. Re-myelination can occur but is a very slow process. However, the nerve sheath will never be exactly the same. Think of your skin-when you have a cut, it creates a scab and then eventually leaves a scar. Your myelin sheath will have some scarring. If the axon is damage, that does not regenerate. I am a Dr. Burt patient. The success rate of HSCT is about 75-80% long term remission. They will not call it cure but most who go in remission have not relapsed to date. They use only your own stem cells. There is also another FB page besides the one listed called Dr. Richard K. Burt Stem Cell(HSCT)Chicago. Both sites are a great way to find info about stem cell along with patient experiences. Most on both sites are MS patients but many are CIDP too. Mary
Thanks very much for taking the time to help me guys. I forgot to mention that my daughters cidp is axonal not demylenating, meaning that the middle of the nerve is affected not the myelin sheath. Does anyone have any experience or knowledge of axonal damage and recovery / remission? I have heard of the success with stem cell treatments but I don’t think we are doing them in Australia.
I`am 61 years old and am in total remission as of today.Going from almost needing a wheel chair to get around to now playing golf every day,biking,swimming.So yes their is hope at the end of the tunnel.I`am living prof.
That is great news John. This is what I want for my daughter. She is in a terrible way at the moment.
Catherine H said:
That is great news John. This is what I want for my daughter. She is in a terrible way at the moment.Good news.Recovery is possible.
For me the turning point was the use of Predisone.IVIG treatments did nothing.The steroids kicked in and I saw results in a matter of days.I have been off all medication now for about 2 months and still feel awesome.My heart goes out to your daughter and I hope she will mirror my results.
Recovery is possible.Never give up.
Thanks John. Ivig has stopped the pain and further damage being done right up until her Neuro stretched the treatment out by 2 weeks. She has hand tremors now and he’s even wondering if it is even cidp. He wants to do all the tests again which will send her over the edge as she hates needles and gets bad anxiety. He says her results aren’t consistent with cidp but the damage is. We are at our wits end. She doesn’t think she has a future. She’s 14.
Thanks akamalaccas. I see her deteriorate physically and mentally and it breaks my heart. All we have is hope.