Thursday, December 29, 2011

2 year report - Enduring Cure Status

Wow. It's been two years already since my HSCT procedure. I still understand the importance and significance of having undergone HSCT to cure my MS, but I think about it less these days because curing my MS has instilled normalcy to my daily function and has allowed me to move on with my life. Now that I have regained my life I think it would be a shame to continue to dwell on the way things 'used to be.' So these days more ordinary and mundane issues dominate my thinking. Things like my son's school, the job, grocery shopping and meeting with friends & family to enjoy the here-and-now. The topic and thought of MS does not rear its ugly head as it previously used to. Quite frankly, as far as my physical health is concerned, I spend far more time thinking about my cholesterol level (which I am effectively controlling) than I do about how MS has affected my life. And I'm accepting of this. For my own life I'm completely OK with MS fading from my existence. I'm glad to say that (thanks to HSCT) I have vanquished MS.

As time goes by following my transplantation procedure, it is ever more clear to me that there is no question HSCT has successfully met (and continues to meet) my expectation of what a cure for MS should be; 100% stopping of the underlying MS disease activity and progression. Since my transplantation procedure two years ago, my MS disease progression has been completely stopped. And on top of this I have also experienced significant improvement (reversal) of most of my pre-existing symptomatic manifestations. I will explain further regarding my current status in the following paragraphs. . . . .

Although I can't currently run a mile (in fact I can't run at all out of fear of falling down due to some residual foot numbness), I can walk a mile-and-a-half without stopping to rest which I could not do prior to HSCT as I was at EDSS 3.5 at that time with a maximum walking range of only several hundred meters without rest. Today post-transplantation I'm improved to EDSS 2.0 and can walk substantially further, improved to the point that with a little forethought on planning & managing my daily activities, I less often notice that my legs are slowing me down. I no longer see a neurologist (no longer necessary) and I love that I no longer take any medication or treatment of any kind for MS. No more regular injections (Avonex that I had taken for 15 years prior to HSCT). Yipee! My future belongs to me again, not a wheelchair.

Following myeloablative HSCT the human body is rendered antigen naive, causing the body to loose immune memory accumulated through a lifetime of exposure to infectious agents, environmental antigens and vaccines. This "loss of immune memory" phenomenon (immune system becoming "antigen naive") is the biggest part of the overall equation as to why HSCT stops the body's damaging autoreactivity to restore immune self-tolerance resulting in a halting of further underlying MS disease activity & progression. But also, it becomes necessary for myeloablative HSCT recipients to be re-vaccinated for diseases starting from the beginning again, just like a newborn child. The following single page summary (list as developed by the US NIH / CDC) details the required vaccinations schedule, of which I have already received the first two rounds and am now working with my primary care physician to have the third & final round completed soon. With the exception that my MS disease continues to be halted and continues to slowly improve over time, following this final immunization task I am now "officially" 100% past the Stem Cell Transplantation era of my life and I expect no surprises to pop up from here on out. (click to enlarge):

And the NIH / CDC comments on the subject of re-immunizations:

Vaccination of Hematopoietic Stem Cell Transplant (HSCT) Recipients

On the subject of my MS symptomatic improvement, a quantitative way to explain the change over time is to express it as an EDSS score. In all fairness, the original inventor of the EDSS scale, Dr. JF Kurtzke, had never designed, nor intended the scale to have a granular resolution finer than half-point increments. So I can legitimately claim that my EDSS improvement to date has gone from the original 3.5 to a current 2.0. However, if Kurtzke had designed the scale to have an infinite number of expressed values, then I would actually claim that today I am at EDSS 1.8. Although an unreal EDSS number, I like to think of this 1.8 number as still being meaningful in a way similar to the usefulness of the mathematical imaginary number i that is irrational, but still mathematically valid such as in the case of x2 + 4 = 0. (Perhaps I'll start referring to this as the EDSSi number.)

So to express the improvement I have so far experienced in my disability, my symptoms have reversed a total of 50% as shown in the following graph I have created to characterize the improvement I have seen over time. However, even though my symptoms do continue to improve, the change over time is significantly slowing to the point that I cannot now discern the improvement over a shorter interval of time, as opposed to the period prior to 18 months post-transplantation when I could clearly notice improvement over a shorter interval of time. It may take several more years for me to directly notice any more 'specific' improvement from where I stand now. But no stress on my part. . . . The activity and progression of my MS remains halted and I'm happy with the magnitude of improvement that I have so far achieved. (click to enlarge):
For those that are unfamiliar with the Kurtzke EDSS scale, you can read about it here on Wikipedia which summarizes it well:

As for a more detailed explanation of my current post-transplantation physical status, I don't want to be excessively verbose in what I write on this posting. So if you wish to read the contiguous details you can read the following (18 month status update) page, and then add to it what I have written below:

First off, I have only three remaining symptoms (compared with about ten prior to HSCT) that I have the ability to detect some residual symptomatic manifestation that is left-over (unresolved) from purely pre-existing (pre-HSCT) issues (as I no longer have any further active, or worsening MS disease progression). These are:

1) Slight right-hand numbness that has improved from baseline, but I can still detect a little residual sensory deficit. This symptom doesn't bother me and is inconsequential. Although admittedly my writing is not as neat and legible as it once was before MS. But at least I have regained the ability to write with my hand that I had previously lost. The same applies to buttoning my shirt which requires some degree of feeling in the fingers to enable the required finger dexterity. I no longer have my wife fasten the buttons on my shirt for me because I have regained the ability to once again do this myself.

2) Leg weakness that has improved from baseline but still persists and becomes evident when I walk long distances. However, I'm fortunate to have experienced approximately 500% improvement of my walking distance post-transplantation.

3) Foot numbness which has also improved approximately 50% since my transplant.

These are the only symptoms today that I can notice, and only symptoms two and three have any affect on my life. I appear from the outside to now walk normally (prior to HSCT I often walked like I was a little drunk even when sober), but unfortunately the partial foot numbness prevents me from running because I would likely fall down in doing so because I lack a sufficient amount of tactile feeling feedback to command my feet in a suitably coordinated way for running that might result in injury if I tried. Oh well, I'll give running a try in several more years once more sensory feeling returns to my feet, which I suspect it might.

My leg weakness could use a little more descriptive information to understand what is happening with me post-HSCT (as is similar to many people with MS-induced leg weakness). I'm not an expert on nerves, but nerve function and action potential is actually a rather straightforward electro-chemical process in which nerve conduction is explained by chemical pathway operating mechanisms involving sodium and potassium ion channels. You can read more about it here if you're interested:

I also borrowed the following graph from Wikipedia via the GNU free documentation license. In its most simplistic explanation, once a nerve has been electro-chemically commanded (stimulated), the rising phase allows the conduction of signals to the desired end-muscles (in this case the legs). Immediately following the falling phase of the nerve action potential (some may say work function) undershoots the resting potential due to chemical depletion. In the case of healthy functioning nerves in people without MS (and in young people in particular), this undershoot time period (called the refractory period in which the nerve essentially ceases operating during this time period) lasts for only a very short time. But as is often the case with people that have been afflicted with MS, this refractory period in an affected muscle group does not recover quickly. When I was young I could sit and rest for just a short period of time following strenuous physical activity to recover. No more. Once fatigued, it takes a rather long period of time to fully recover my leg strength to continue on. Sometimes several hours. A residual affect of my pre-HSCT MS. (click to enlarge):

So at this point in time the only two things I would hope for to improve my post-MS physical life is to regain enough feeling in my feet to allow me to resume running once again, as well as a shortening of the (leg-associated) nerve refractory period so that I will face the fewest possible circumstances of ambulation restriction due to muscle-tiring. This is all within the realm of possibility. I will report accordingly if/when things unfold.

It is also important to note that prior to 18 months post-HSCT my pre-existing MS sympoms that remained would fluctuate in intensity over an interval of several days, or weeks. Now at two years post-transplantation my pre-existing symptomatic intensity has stabilized and my symptomatic manifestations are consistent from day-to-day. I generally don't have "up" days and "down" days. Each day is reasonably consistent with all the other days.

From now on I plan to make yearly updates regarding my post-HSCT status. However, I may make a few other postings on the related topic of HSCT to cure MS if I feel like doing so.

Last note. . . . I have so far been able to share my knowledge and experience with approximately a dozen other people that have gone on to receive HSCT for their own MS at various facilities around the world. And the good news is that I am currently communicating with approximately another dozen people that will also soon be seeking or receiving HSCT. Although I don't give medical advice, I am happy to share my info and opinions based upon what I know about HSCT as the only current cure for MS that can be had at the following locations that I am aware of (and I'm sure there are likely more treatment facilities that I am not aware of):

For those that do receive HSCT to cure their MS, welcome to the club! We are still a small, but growing cadre. And I'm always happy to see another person beat their MS. Always.