I used to wake up and ask "why me?" Why was I so unlucky to get multiple sclerosis? Now I ask a second question—why was I so astronomically very lucky to be one of the very few MS patients in the world to be treated successfully with HSCT by the world's leading immunologist, Dr. Richard Burt? On the first question, medical experts can speculate that me getting MS was a combination of genetic susceptibility and exposure to unknown environmental factors. On #2, how did I get to do HSCT, a review of this blog back to October 2013 shows a combination of good fortune, luck, determination, and perhaps being blessed for no reason I can currently understand.
Getting MS is like winning the lottery in reverse. Most people will never get MS. Out of a U.S. population of just over 300 million, approximately 300,000 people are estimated to have MS. That's just 0.1 percent, making MS rare enough to be listed by the National Organization for Rare Diseases (NORD). MS is considered to be manageable, but have no cure. Symptoms vary from mild inconvenience, all the way to severe disability and death. Current statistics show that people with MS often live just a long as the general population. While that is a small bit of good news for the afflicted, the stats also show that the MSer population as a whole lives 93 percent as long as those without the disease. I felt this was a necessary number to consider when weighing the risk of treatment to stop my MS with HSCT.
It's important to note that MS is NOT usually a death sentence. In fact, many successful people, both unknown and famous live with MS. I bring up MS fatalities not to be dour and depressing, but to point out that some MS cases like mine warrant special consideration for alternative treatments such as HSCT. HSCT stopped my MS when no standard of care MS drugs could. HSCT got me out of a wheelchair and I have little doubt that HSCT saved my life. And though Dr. Burt won't call HSCT a cure for MS (he says remission), many of his patients, including me, feel we have been cured. The autoimmune attacks have been halted, we are off MS drugs, and we are now healing rather than getting worse.
Though the medical establishment positions MS as a non life-threatening disease, it does kill people directly and indirectly. A partial list of celebrities who have died from MS includes Richard Pryor, who joked from his wheelchair that MS stood for "more shit." Annette Funicello, the cutest Mouseketeer, also died from the disease, though she suffered quietly with it and said little for many years. A partial list of other celebrities who died from MS can be found here.
Though I've gotten to know many people who are living successful lives with MS, I also have known three people who have died from MS. I've also spent enough time in an MS clinic waiting room over the years to see patients with rapidly worsening conditions. The drugs were not helping them, just as they eventually stopped helping me and began making me worse.
My reasons for choosing HSCT are as follows:
1.) I was getting rapidly worse despite MS drugs. The most recent of which, Tysabri, threatened to kill me with the deadly brain infection PML, then gave me a crippling and life-threatening MS rebound attack when my neurologist attempted to transition me to another drug.
2.) HSCT is the only known treatment shown to stop MS. All current drugs, at best, merely reduce relapse frequency and slow disease progression.
3.) I was miserable from MS attacks, in pain and non-functional. MS attacks on my brainstem were aggressive and dangerous. In comparison, fatality risk of approximately 1 percent with HSCT seemed worth it for an 85 percent chance of success in stopping the disease.
4.) Dr. Burt, one of the world's leading immunologist and the foremost expert on using HSCT to treat autoimmune diseases, accepted me as a candidate for treatment because he believed I was very likely to be helped by the procedure. Many other MS patients try to get into the program but are turned away because their MS is too far advanced. If I had waited, it was likely that I would become secondary progressive with a significantly reduced chance of successful recovery.
5.) Though my health insurance company and my now ex neurologist told me HSCT was unproven and too risky, my own research had shown me otherwise. Their standard of care had failed me and I was ready to try something new.
Now seven months after HSCT, I no longer use a wheelchair, MRI scans show my MS has been totally stopped. My nerves are healing, and an exercise program that includes specialized physical therapy and Pilates is helping me walk again. The recovery is still a bit up and down, but the trend is toward improvement. On my best days I walk nearly a mile. One year ago, such a physical feat was only a fantasy. After a lot of bad breaks dealt by MS, it's looking like my luck has changed for the better.
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