Keep Running and Don't Look Back!
I was diagnosed with relapsing remitting in 1996. It was quite a shock. I remember driving home that evening knowing I had hit absolute bottom. Horrible dark and lonely feeling. I heard Vanessa Williams singing "What Child Is This" on the radio, and somehow knew at that very moment things would work out.
After grappling with different neuros for 3-4 years I found a neuro and clinic that was willing to tinker, tailor and try different treatments. Interferons did not seem to help. In 2000 I started a two year course of Novantrone that stopped my MS cold. Since then I have been on interferons and Cellcept dual therapy. Recently I went to monotherapy on Cellcept. i have had no serious relapses in twelve years, with the exception of some visual effects which ocurred on a foolish four week hiatus from the Cellcept. Heavy steroid use early on destroyed my shoulder joint and lead to a titanium replacement. Do not know if or when the other joints will poop out but i guess that will just be another funny story to tell. Shoulders can be replaced but gray matter can't - find a neuro with a zero tolerance for flareups and the accumulating disability they bring.
Once I got over the initial shock I resolved to keep moving forward no matter what and to keep a positive frame of mind. On the surface of things I am quite pleased with where I am. But I do live with the apprehension that this course of treatment will eventually play out. So I keep running knowing the disease is somewhere behind me. I never look back over my shoulder and keep running.
I initially shared my condition with coworkers but found that it lead to a different perception in the workplace. I no longer share with coworkers. My kids do not know yet.
Since diagnosis I have built a family with three children and accomplished some success in the practice of law. My success is due to finding the right clinic and right group of neuros, informing myself about treatments and new developments, not taking no for an answer, and being willing to try off-label uses of drugs on the market for other conditions. You need an odd and sometimes dark sense of humor because sometimes you feel you hit bottom, and only an odd ability to laugh at your messed up situation can reset your state of mind.
All of you out there are close in my thoughts and prayers. Sometimes this gets difficult, i know. But just keep moving forward and seek out the little, unremarkable things in life that can fill you with so much joy you feel it is running over. There has never been a better time in history to have this disease!
You cann do this. Now get moving!
How many specialists did you see before finding "The One"?