Keep hoping.Getting the diagnosis is a major hurdle you have crossed.That's a big step forward.They know what they're dealing with now.
Catherine H said:
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.
Catherine,
Dr. Burt is in talks to begin HSCT-MS trial in Australia. He has the trial in other countries also. It may only be a matter of time before the CIDP trial is available there too. See msconnection.org article about Dr. Burt.
The immune system is immensely complex. The basic principle of the immune system is that it is dynamic and able to fire up the genetic codes to find the millions of possible lock-and-key combinations to combat antigens (formulated in the lymphatic system). IgG is the grabber of the marked antigen that takes it to the next step towards destruction, however the bottom or the "Y" dimer that is IgG malfunctions in it's chemical signals to T-Cells and other aggressive terminators. This causes cytokine release and a whole host of complex chemistry... and then all hell breaks lose and this is called inflammation, which in turn causes more complex cascades... a real nasty business at the molecular level. Please correct me if I have gotten this wrong.
I have no idea what you are talking about Estaban 
however thank you for that information. I am going to investigate it on the net.
She is in hospital today having her ivig treatment and her Neuro just visited. He’s not sure it is even cidp now and wants to redo some tests. I’m scared he’s going to stop the ivig because of this. It’s the only thing stopping further damage happening. She’s in a very fragile mental state.
I’m going to look up about Dr Burt.
Catherine, I was with my daughter in hospital 4 weeks ago, and they also suspect if she even has cidp. They also talk about axonal demylenating. She had another tests so we wait for a results…but I understood that Ivig is a treatment for many autoimmune diseases- inflammation, so we are going for a 3.ivig in a few days, and I think in that time the result will be done.
Doda please let me know how your daughter goes with her tests. What tests is she having done? Good luck with the icing, it works for my daughter and I hope it works for yours.
Thank you tperri for giving us the correct information. I would also like to add that 98% of Dr. Burt's patients are in remission 5 years later. He does not say 100% because nothing is ever 100%.
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 .
There are cases of remission. Here's and example of an MS drug used to stimulate poor rsponse to IVIG:
Thank you very much Loni. I am going to take this with us to her Neuro appointment today.
Loni Hart said:
There are cases of remission. Here's and example of an MS drug used to stimulate poor rsponse to IVIG:
If anyone has partisicapted in Richard Burt's Hematopoietic Stem Cell Transplantation study please share results:
| Estimated Enrollment: | 50 |
| Study Start Date: | March 2005 |
| Estimated Study Completion Date: | December 2016 |
| Estimated Primary Completion Date: | December 2015 (Final data collection date for primary outcome measure) |
More info on this study at: http://clinicaltrials.gov/show/NCT00278629
BBarbie said:
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.
ABOUT Alemtuzumab
I am a Dr. Burt patient-post stem about 22 months. I am very pleased with the outcome of my transplant. I would be happy to share experience and results if anyone has specific questions. The Fb page is a great resource and I belong to that one and another specific to Dr. Burt and stem cell. Generally, I am much improved without any additional treatments but still have some pain. So, any questions ask away. Mary B
Loni Hart said:
If anyone has partisicapted in Richard Burt's Hematopoietic Stem Cell Transplantation study please share results:
Estimated Enrollment: 50 Study Start Date: March 2005 Estimated Study Completion Date: December 2016 Estimated Primary Completion Date: December 2015 (Final data collection date for primary outcome measure)
More info on this study at: http://clinicaltrials.gov/show/NCT00278629
BBarbie said: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.
Their is such a thing as remission.I am living prof.In 2008 I was using a walker and nearly in a wheel chair.I could not walk,nor hold a pen or fork,could not drive,was totally helpless.Went into the hospital for IVIG treatments which did nothing for me.My doctor put me on steroids and within a matter of days I was getting back the feeling in my feet,legs and arms and hands.Weeks later I was almost back to normal.Today I can tell you I am in total remission.Play golf 6 days a week,swim and go biking.I have been off the steroids now for about 8 months.And holding strong.I count myself very very lucky but it can happen and remission is a possibility don`t let anyone tell you different,
Great result John 1953. This is what I wish for my daughter. They are about to try a immuno suppressant with her. I am very scared because of the risks. Sounds like you are doing very well. Congrats.
john1953 We're meeting with our Neurologist next month.
Can you tell me how long and the does/Kg of body weight you were on -so we can disucc it with him?
Were you also doing any special food dieting/OTC's?
Thanks -Stay Well!!
Mashrub Mary B (RE:"any questions ask away. Mary B")
Yes please: Is there a link I can follow-I was trying to track any publications by Dr. B. on outcome..perhaps a bit early < ? >
Any memorible comments by other people you met in the study? Do you stay in touch with them? It looks as though the study is still open or have the coverted it to treament becuase of unexpected success < ? >
Hi Lori,
I am 78.5 kgs reduced from 106 kgs. in weight and am prescribed 45mgs IVIG Gammaplex every 4 weeks.I am due my 80th treatment tomorrow.When I met my physician he felt my muscle weakness needed an extra 5mgs starting tomorrow.
I hope this helps.
As Bens Friends tell us on the site it is positive mental outlook that counts.Call it what u like but it smells like victory to me.
hi Loni,
There two Facebook pages that are great to follow. There is scientific info on both and many post HSCt patients that will answer any question you pose to them.
The first one is Hematopoietic Stem Cell Transplant -MS & Autoimmune Diseases and the other is Dr. Richard K. Burt Stem Cell Study (HSCT) Chicago. Ask to join and read file for a great deal of information.
Loni Hart said:
Mashrub Mary B (RE:"any questions ask away. Mary B")
Yes please: Is there a link I can follow-I was trying to track any publications by Dr. B. on outcome..perhaps a bit early < ? >
Any memorible comments by other people you met in the study? Do you stay in touch with them? It looks as though the study is still open or have the coverted it to treament becuase of unexpected success < ? >
Thanks (RE: "There two Facebook pages that are great to follow....")
However Dr. Burt's study is restictive by age,,,,hopefully it will soon be a clinically acepted practice. IVIG @ $11,000/pop(Aprox $250K/Yr) cannot be practical in the long run...
Dr. Burt does not get stem cells from "throw away parts" as stated in one of these blogs. He injects the patient with a drug which stimulates patient's bone marrow to produce more stem cells. Then patient receives a few days of chemo (Cytoxin?) which kills off the immune system. Patient is in absolutely sterile surroundings when this happens. The previously harvested stemcells are then reinfused into him. These stemcells immediately begin building a new immune system that doesn't have the disease fighting cells which were attacking patient's own tissue. My son had this treatment for a very malignant form of CIDP in Feb/Mar '10. Myelin is a fatty substance which lines & insulates the nerves, and it grows back very fast. It's only the nerves themselves which grow back slowly. In son's case he could not walk, use his hands, & was beginning to have trouble breathing & with his eyesight when he went to Northwestern. But he had gotten so sick so fast that most of the damage was deMyelination, rather than axonal nerve damage. After the stem cell transplant, within 30 days his immune counts were back to normal, within 6 weeks he was walking haltingly & could feed himself. Within 1 year he had recovered all function. He is now nearly 5 years post transplant, during which he's had to use no medication because there's no disease. He takes no immunosuppressants because the stemcells were from his own body, not a foreign bone marrow donor. This treatment & Dr. Burt was a miracle. The negative tales I see on this blog are just fiction. Son was there, son went through it, son came out the other side a well man.