+6 month update:
You may have noticed that I’ve remained silent for a while. I have not reported my progress for 2 months now. This was because there was nothing much to report. While the chemo side effects were incrementally improving, it was impossible to tell the difference between residual MS symptoms from residual chemo symptoms. And so I chose to wait until there’s something worth reporting . And besides, six months post-transplantation is a milestone for most people in recovering from HSCT, and a milestone in reporting MS status.
A short reminder: I was diagnosed with RRMS in 2003, though in hindsight I can trace the likely onset of the disease back to 1997. In 2008, without apparent warning my symptoms worsened and I kept accumulating disability with no remissions. A clear indication that my disease transitioned (as it does for most people with MS) into definitive SPMS. My use of immune-modulator drug therapy (Tysabri) made no difference in the progression of my symptoms and I knew exactly where I was heading: a wheelchair.
Since I did not consider the possibility of spending the rest of my life crippled and dependant to be a viable option, I started to frantically search for a solution to halt the progress of my then confirmed SPMS. And so, in December 2010, I stumbled upon George Goss’s blog. This ‘crazy guy’ had the ‘nerve’ to claim he was ‘cured’ from MS – a disease that is nearly universally considered to be incurable. Luckily I suspended judgment and kept on reading George’s blog. I didn’t (couldn’t) stop until I read the whole blog, including the endless host of scientific papers George sites to support his assertion that HSCT is a cure for MS. I’ll spare you the details, but with George’s help, six months later I was admitted to the world class Hematology department of the Heidelberg University Hospital in Germany to undergo an HSCT procedure under supervision of the amazing Professor Anthony Ho.
George always said that six moths post transplantation is where I should most likely turn the corner and notice whether or not probability has been kind to me: did I or did I not end up on the right side of the treatment efficacy fence (+/- 80%) to stop the progression of my MS disease activity.
And turn the corner I did!! After 6 months I feel entirely confident to make exactly the same big, hairy, audacious statement: My MS has been stopped in its tracks and I AM CURED. The way I experience it, this falls nothing short of a medical wonder.
What I mean by “cured” is a ‘complete halting of disease activity and symptomatic progression.’ Before the HSCT procedure I could tell I was getting worse at any specific point in time by just comparing how I was 3 months earlier. Six months after the procedure, not only have my MS symptoms not progressed, I also clearly notice a host of signs that several of my MS symptoms are improving (something virtually never heard of in SPMS cases like mine).
Let’s get a little more specific here and take a virtual journey from top to bottom:
- Starting with my brain: I am now completely free from the so called ‘cog fog’. I’m completely lucid, think on my feet, short-term memory is as good as it ever was, I no longer search for words and I am no longer moody. Just like I’ve been transported in time to an earlier year of my life.
Additionally, vertigo and heat intolerance that I previously experienced have entirely vanished.
- Eyes: The slight optic neuritis ever present in my right eye is now gone and fully resolved.
- Mouth and throat: My speech shifted up a few gears; I am able to speak noticeably faster and I am a lot more fluent & flowing with my words. Swallowing is back to normal and I no longer suddenly ‘choke on my coke’.
- Right arm and hand: Getting stronger. I can now hold a knife or spoon without feeling it is a 100 pound weight. I have also regained lost writing ability. Not fast hand writing, but it is reasonably legible. I am lifting weights, and I am making daily, small, but never the less evident and continuing progress.
- Bladder: Urgency is greatly reduced and my urinary tract works like you may expect from a 49 year old. Wow, what a relief!
- Right leg: spasms are gone, red and at times black toes turned nice and pink. My muscles are getting stronger and walking is starting (I stress ‘starting’) to improve. My home trainer is registering daily progress, and I can climb the stairs at home with markedly greater ease.
- Overall: Stamina and vitality levels are picking up quickly and people around me are impressed by the progress I am making. I sleep like a baby, wake up fresh and remain so throughout the day. I can read a book without falling asleep. Finally, my body temperature is normal again and my extremities are warm.
Now back to the ‘contentious cure’ word. If what you mean by ‘cure’ is to turn back the clock and instantaneously erase all traces of neural damage from MS, then we are not on the same page. I went in only hoping for stopping disease progression in its tracks. I viewed the anecdotal and clinical evidence and it appears to me that it is realistic to hope for some degree of damage recovery in the 2 years following HSCT as a potential bonus. Nerves are a tissue that regenerate very slowly. Worse, beyond a certain threshold of damage, they are beyond repair and all one can hope for is for some kind of neural bypass to emerge over time. What this boils down to is that the damage resulting from years of a wayward immune system pounding of the nervous system cannot be reversed overnight. The great news is that once the immune tolerance has been restored (as I expect has happened in my case due to HSCT), the body then has a chance to start inspecting and repairing the damage and restoring whatever possibly can be restored.
Thank you George, I am grateful for the air I breathe and the ground I walk on.