A Day in the Life at the NIH Trial

Nothing ever goes exactly as planned in the NIH. This is an observation, not a criticism. Sometimes, a change in plans works to my advantage. When my husband and I arrived promptly for my seven a.m. appointment, I was told my eight a.m. MRI would have to be rescheduled. There weren’t enough technicians. My husband and I are adept at such situations. My body’s fickle insurrections have given us plenty of exposure to the changing of plans.

My first appointment was to review the revised consent form with the magnetically charming nurse Naomi. Within five minutes chatting over the forms she’d told me enough about life in DC for me to recommend Chimamanda Ngozi Adichie’s novel Americanah. As it turned out, Naomi had read that book and loved it, loved it so much she’d read it non-stop through a red-eye flight to Dubai, forgoing in-flight movies, forgoing sleep.

It was Naomi’s job to inform me that I would not be getting better care at the NIH than I could get at my local neurologist. I adore and admire my local neurologist. But I ask any of you with MS: does your neurologist have time to assess your condition for four hours? The level of care just does not compare. And more importantly, my visit to my local neurologist is designed to help only me. An NIH visit is designed to help multitudes.

Naomi told me I might be eligible to be paid $200 for my spinal tap. (There is usually no payment involved in a clinical trial, just reimbursement for food and travel.) I was open to this change of plans.

After I saw Naomi, I saw Dr. W. The last time I’d seen her, she’d been displeased by how easily she could push against my leg. She’d uttered one syllable, “weak.” I’ve been working  on my leg strength ever since. This visit, I gave her sufficient resistance. But she simply gave me a new area to work on. “You have shitty balance. You can improve that. Practice!” I’d improved my strength. You can bet I’ll improve my balance

Dr. W proposed a change of plans even more extravagant than Naomi’s $200 compensation. She noticed I’d just had a spinal tap the year before. She consulted the timelines of the studies I’m in, and declared I wouldn’t have to have a spinal tap this year, after all. This piece of news was an order of magnitude more exciting than the prospect of a spinal headache, and two hundred bucks. “I am your advocate,” she declared. We fist bumped.

Next came  the auxiliary scales. I performed the same battery of tests I always do—I did worse on some, better on others—all in all, it seemed a wash. Dr. W will be calling me next week when the data is in.

Further updates on this visit will have to wait until tomorrow. I am tired, my legs are crawling with electric pain, and my husband and I are planning to get up early and take the Metro into DC tomorrow to visit a museum.

Thanks for reading!IMG_0049


30 Days Later

You would think , after twenty one years of being an MS patient, I would  have developed some cross-disciplinary skills, and also know how to be a decent opthamology patient. The most valuable lesson I have learned as a patient: Don’t Panic! The second-most-valuable lesson: Ask Questions. And if you don’t like the answer, get a second opinion.

I tried not to panic when I was told my retina was due to due to detach within 30 days. I duly got my second opinion. The second opinion guy flashed bright lights in my eye, then took a high tech picture, and told me my retina was due to detach within 30 days. This would appear to be confirmation of the first opinion…if not for the fact that the second appointment was five days later. Why didn’t Mr. Second Opinion say, 25 days? But did I ask this question? No way! I am not a smart ass…with my doctors. Meanwhile, I panicked. I ordered audiobooks.  I abanodoned a seven hour solo road trip, too afraid of what might happen if my retina chose that tiny window of time to detach, stranding me far from a specialist.

Well, it’s thirty days since the first appointment. My retina is still with me. My first opinion doctor tells me that the chances of my retina detaching have now fallen down to 10%, since it hasn’t detached already. This is brilliant news. I am going to celebrate by running out and buying a hard copy of Americanah by Chimamanda Ngozi Adichie, which sounds fantastic as an audiobook, don’t get me wrong, but I adore this novel enough to want to absorb it the old-fashioned way, mediated through my fickle eyes.



Enter your email address to subscribe to this blog and receive notifications of new posts by email.