Nine days ago I was diagnosed with the relapsing/remitting course of MS. I am currently about 5 weeks into what should be about a two-month episode that has meant double-vision and nystagmus, dizziness, some numbness and paralysis of my face and tongue, and some (as WAI might label it) cognitive impairment.
It turns out that the mysterious phase of similar symptoms (plus some aphasia) I experienced in 1996 was my first "exacerbation".
To be sure, a period of eight years between my first and second attacks is a very good sign, and my symptoms have not included blindness or incontinence, but not being able to see or think clearly is quite disturbing all the same. I find that I, quite uncharacteristically, miss things I reach for, drop things, stumble, and bump into walls.
On tuesday, I receive the first shipment of self-injected drugs meant to slow the progression of the illness about 30%-50%, at a cost of about $10K/year (covered by insurance). I have chosen Avonex, based partly on the condescending videos, all evocative of feminine hygene commercials, but mostly on my perception that weekly intramuscular shots of interferon would by far more sustainable, with respect to my injection sites, than daily/alternating-daily/thrice-weekly subcutaneous injections.
I do not despair, though I do hope that I may think, see, and taste again soon. Damn.
All I can tell you is that it can be beat. My children's pediatrician has MS, as does a friend and neighbor. (I should say "former neighbor", because the family moved to upstate New York to be close to specialists.) The pediatrician is one of the best doctors I've ever known. She sometimes misses days due to the disease, but when she's there, she's terrific.
Each of us carries some burden -- some heavier than others. I sincerely hope yours gets lighter. But do remember, it's what you do with the time you have that matters.
