What’s the Plan?

3 Dec

I was going to try and use my own words to tell you what I am planning, but then I remembered that I took freshman Biology twice to get a solid B-.  What follows is an excerpt from Neurology Reviews, vol 14, No 8, August, 2006:

Immunomodulating treatments are currently the only established forms of therapy for multiple sclerosis (MS), but by and large these treatments have been only partly effective for most patients. Based on the results of experimental models and on clinical observations in patients with malignancy and patients with MS, hematopoietic stem cell transplantation was proposed for the treatment of autoimmune diseases and has been shown in several clinical trials to be at least moderately effective in patients with MS. A newer strategy—high-doseimmunosuppression (also known as immunoablation) plus autologoustransplantation, which involves the complete eradication and reconstitution of the patient’s bone marrow—has shown promise in early studies and is now being investigated in ongoing phase II trials.  

Autologous hematopoietic stem cell transplantation was first studied [in the US] as a treatment for MS in the late 1990s [and in the early 1990’s in Europe]. Results have been analyzed in both single-center andmulticenter trials and collectively in a retrospective study by the European Group for Blood and Marrow Transplantation (EBMT) retrospective study. Of the 85 patients with MS in the EBMT database, 74% were found to be progression-free at three years from transplantation, a percentage that is fairly consistent with all transplant studies in MS reported to date.

(note that the date on this is 2006.  The numbers continue to remain at about 80 percent of patients seeing a complete stop to the progression of their disease.)

Here’s how my friend the scientist, George Goss explains it:

“As a curative treatment HSCT works by changing the body’s overall T- and B-lymphocyte epitope (antigen binding) repertoire, inactivating autoimmunity (making the body’s immune cells “antigen naive”) which results in restoration of immune self tolerance. This is often referred to as “resetting” the immune system which stops the underlying MS disease activity & progression. Once achieved, the body then has a chance to repair (or compensate for) existing neural damage that is not undermined by further MS disease progression, often resulting in substantial and lasting symptomatic improvement.”

Let me explain this to you the way I explained it to my ten year old daughter:

“Multiple Sclerosis is simply a bad immune system.  HSCT is a procedure that takes the bad immune system and shuts it down before booting it back up to be a disease free immune system.  While the procedure itself is grueling and not to be taken lightly, it is the only medically offered hope for MS patients who wish to stop the progression of their disease.”

I understand that chemo is a radical choice to be making when death is not on the line for me as it is for a cancer patient who faces the same choice.  The possibility of this not working is there.  The possibility of this being fatal is there.  But, when I hear “possibility”, I hear “maybe”.  My reality right now is that my body is declining.  It cannot be measured day to day, as I have good days and bad days, but the reality is that my ability to live comfortably is slipping away at a steady rate year to year.  I will not die with MS, but I will live a long and brutal life.  That is my reality.  When I hear “reality, I hear “absolutely.”

The science of what I want to do is not new (commonly referred to as “bone marrow transplant”).  The application of this procedure to MS is only as new as 20 years ago.  I feel confident that this will be standard protocol in the USA for the treatment of MS, as well as a host of other immune dysfunctions, by 2020-2025.

This is huge, I know.  I heard about these studies when I was about three years into this disease and it all seemed kind of drastic and unnecessary back then.  I am so very happy to know that God continued to prick the minds of science detectives for all these years.  A jerk doctor told me when he diagnosed me that, “This is an exciting time for MS!”  Maybe he was a jerk, but he may have also been right.

Edited to add: If you are an MS patient looking for more information, George Goss’ blog is a fantastic clearing house of info and is a great place to start.  Good google phrases to get you started are:  “Autologous hematopoietic stem cell transplantation, autoimmune dysfunction”, “HSCT, multiple sclerosis”, and, “nonmyeloablative transplant, multiple sclerosis”.  Just copy and paste any one of those combos into your search engine and you will get a whole lot of great information.

2 Responses to “What’s the Plan?”

  1. Stacy Courtney December 3, 2011 at 2:40 pm #

    Amy, I am so excited for you! I believe that God has definitely brought you to this point and wants to be glorified in this adventure! He does have great plans, I am sure of it! You can count me in for being a ninja prayer warrior. God is good, and He is completely in this! Love you!!!


    • ericswife December 3, 2011 at 3:47 pm #

      Thank you, thank you!! I am so excited about my team of praying ninjas! I love you lots!

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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