Feeling Better, Finally

I had no idea just how much the test dose was going to wreak havoc on my body! I went from massive drug level (oral dosing), to zero drug level (no oral dosing), to massive drug level (IT dose) followed by rapid zero drug level (metabolism), to slow reintroduction of oral dosing. My body was in a state of shock for about a day and a half as things got back to somewhat normalcy. I am not yet to pre-test dose levels and control of my spasticity and am wanting so bad to wake up tomorrow morning with everything done and over with!

I am most hopeful that surgery will be scheduled as early as mid-April, though that is being optomistic. After the pump is surgically implanted at Tacoma General Hospital (one overnight stay at best), I will be discharged and immediately admitted to Good Samaritan Hospital for 7-10 days where the pump experts will tweak my dose levels and perform aggressive physical therapy. After that, it should be just a matter of maintenance of both. Maintenance depending on my response to changes, but estimated to be monthly at the most, every 3-6 months once stabilized.

For now, I have completed my 2nd of three doses of IV steroids. These are high dose, pulsed infusions for the sole purpose of immuno-supression. The root cause of MS is that it is an automimmune disease; an overactive immune response, such that it attacks the neurologic system. Every three months I will be getting these infusions, as before I would only get them in response to a relapse. Ever had them? So not my idea of a good time.

The current drugs on the market for MS (doesn't treat it, just shows that over time cause LESS disability) are no longer viable options for me. I have tried many of them without much success. Rituximab is the next promising drug for me, a drug currently used to treat Rheumatoid Arthritis and Lymphomas. It is in phase III trials and is showing excellent results, but since it is not "off-label" for MS, insurance won't pay for it. My neurologist is asking the manufacturer on my behalf to donate it to me on humanitarian grounds.

There is much on my plate, but I am ever faithful that things indeed are looking up. I appreciate the support from friends, family, and now coworkers. It is a tough thing to share this stuff, so thank you all for the wonderful words of encouragement. I do feel myself "virtually" hugged by them!