My Experiences with Clinical Drug Trials
And what I learned along the way.
Apparently the only way to slow me down at all was a serious chronic illness: I was diagnosed with Relapsing-Remitting Multiple Sclerosis on January 13, 2009—interestingly, also one of my brothers' birthday. I committed to a clinical trial for what became a drug called Ocrelizumab, but before that, I spent 6 months poking myself with an Avonex needle and learning to cope with side effects the first two months. Resilient in the extreme I am, but this tested everything the overintellectual overachiever in me had.
Here I am in Puerto Rico. I’m not a person to be slowed down.
I probably have had MS for about 14 years, and was diagnosed at first with RA in 2007, summer. Luckily, in Nov 2008 I hit Vertigo City, and after asking for a pain management referral, got a neurologist who dared to give me valium and meclizine for vertigo and got me a MRI. I clearly remember he called me soon after the MRIs were taken, asked me to come in, and explained that the radiologist reading the MRI had panicked and called him, saying 'You have to get her back in!'. He was pretty sanguine, but also told me, "If you were my daughter, I would tell you to take this [MRI] disk and go to the emergency room at Barrow or go to San Diego." I looked at him and basically asked, "Really?" His contention, and I believed him, was that my little podunkia county could not get the team he thought it would take together in less than several months' time, whereas Barrow had everything in one place. He let me know he didn't think it was cancer, that maybe it could be MS, but oh, "you also have a disk protruding right... there." I wasn't worried really at that time, but I knew too many things were off for me not to listen.
Long Story Short
Long story short, I drove to Phoenix the next day with my hubby-bear and proceeded to have every bit as exciting and frustrating a diagnosis process as the TV show "House" presents. I believe I had seven doctors in several specialties trying to diagnose me-- a neuroimmunologist, a neuroncologist, an infectious disease guy, a neurosurgeon, a rheumatologist, and at least two other neuros. Two wanted to biopsy my brain (AHHHH!!), and luckily my hero-MS-doc held them off while I was tested for every conceivable disease. Yes, including the rare, bizarre ones. I swear.
Hanging out with a wee friend.
In the end, after eight days in the hospital, I had one diskectomy in my neck, had given lots of blood, but went home for Xmas. I had to see them four weeks later, and two things happened-- my neurosurgeon said the neck was looking good, and my hero-MS-doc gave me my official diagnosis. Sis, hubby, and myself were there. Thus began the real drama in life.
MS has a frustrating unfolding, and many years off meds because of the long term effects of the clinical trial drug 2.5 years ago crashed with a relapse involving crutches and a wheelchair. I struggle not to make sense, but to make the best. At times, the best is actually sleeping well! But what option is better than persisting?
My Advice for Others
If I have any suggestions, it would be to not attempt this kind of ride alone. I'm beginning to understand how easy it is to care for everything but oneself, but also how, with the grace of insurance, I can find other tools to help me feel less abashed by my slow slide into a less-frenetic life. Go online. Go in person. But go find the things to make life not only bearable, but proactively possible.
Sammy is a lover of the obscure, cats, and Texas. She says, “I overthink my way into drama entirely too often. My cats, dogs, and husbear are thankfully tolerant, and I know I'm blessed to have such love around me on the wild, MS-colored life.” Check out her lighthouse in San Antonio, Texas!