I've had a little of this, a little of that today. I'm currently fighting off having a pity party for myself, so I thought I would just sit down and blog.
Today was my long-awaited appointment at Johns Hopkins, where I thought I was being sent to see an MS specialist. If you have hopped on my train just recently, let me back up for a minute. If you already know this stuff, feel free to skip ahead.
In early 2006 I suffered what doctors thought was a stroke. I had been on the way home from my mother's funeral and was still recovering from having a bi-level fusion on my neck. It was a rough time. I landed in a hospital in Charlotte, NC, where I stayed for 3 days. They finally let me come on home but told me that I must see a neurologist when I got there.
Long story short, it wasn't a stroke. They ended up diagnosing me with "complicated migraine" in which a neurological malfunction made it look like (and feel like) I was having a stroke. At that point, my MRIs still looked unremarkable. A lesion or two, small. Many other weird things happened with my health, and I had several more inpatient stays for tests.
I never got completely better. I continued to have increasing spinal pain and had a few more "attacks" of the weakness and paralysis. My neurologist tried a bunch of meds with me. Most of them were either far too sedating for me to keep working or caused an allergic reaction. The last one he put me on, Lyrica, did help with the pain (which eventually showed up in my face, too - trigeminal neuralgia) but eventually I developed an all over body itch (no rash) that they determined was a medication reaction. Away went the Lyrica. Thankfully, so far, the facial pain hasn't come back.
The most recent problems started in November. I began to have some profound weakness in my legs and in my left arm. I asked my pain specialist about it. I wondered if it could be due to the small disk bulge I have at L4/L5. He didn't think so and said it sounded like MS. He sent me for a brain MRI. The next week, his nurse practitioner delivered the news. My MRI results said that I had "multiple lesions consistent with multiple sclerosis." I cried in her office. I was upset, sure, but I also thought it made sense. So I went back to see my neurologist.
He didn't think the MRI was all that special. He said he could do a lumbar puncture, if I wanted. Ha! Who actually WANTS one of those?? He said that it would help him rule out some other things. So I submitted to that, rather tearfully. He was gentle, though, and I was okay - until three days later when I developed the worst headache of my life. Turns out I hadn't properly healed up from the LP. He sent me to a surgical center for a blood patch. You can read about that experience here. In the end, the results were negative. Yet he said that some people with MS don't show any evidence in the spinal fluid (now he tells me!).
He offered to send me over to Johns Hopkins. I hemmed and hawed.
"Are we barking up the right tree?" I asked. "Is there really any point?"
"Well," he said, using his favorite filler word, "there's a possibility we've missed MS. I can send you to a specialist over there."
I agreed to go. It took a full 6 weeks before anyone contacted me about an appointment. When they did, it wasn't with the doctor I thought I would be seeing. And then they ended up changing my appointment to today because of a scheduling conflict on their end. I looked at the letterhead, though, and it appeared I was going to see the doctor in Cognitive Neurology. I called ahead and talked to his secretary. I was concerned that I wasn't going to the right place. She assured me that he could treat me and that he did see patients with MS.
Big mistake on my part. You see, originally I was supposed to be at American University today, a college to which I've applied to the MFA/Creative Writing program. They were having a grad school open house, and I had signed up. But no. I figured the doctor's appointment was more important.
I drove 1.5 hours to get to the facility in Baltimore. I took my life into my hands driving through the parking garage. I carried an armload of bulky films and records, which I was told to bring. All of this, just so I could see Dr. Smug. That's much nicer than the name I was calling him earlier.
This guy spent maybe 5 minutes looking at my films. He didn't want to see any of the spinal films, just the brain. Ok. Didn't want to see any of my records. He just flipped through the notes from the stroke specialist I had seen and then looked at the fax from my neurologist (God knows what that says...).
"I'm not impressed," he said, handing my films back to me.
WTF was that supposed to mean??
"I don't think it's MS," he said. I guess my face told him that I was sick of the runaround. "That's good news!" he said, smiling.
No, it's not good news, because it tells me nothing about why I'm having trouble with my limbs. He blah-blah'd on about stuff he didn't think I understood. I glazed over, understanding one thing for sure - I was sitting in front of an asshole.
Then he went even further, "In fact, I don't think you have anything neurological wrong with you."
How in the heck could he say that?? After all, I did have a solid diagnosis of complicated migraines, which are neurological. He suggested that my doctor put me on Imitrex for the migraines. Was he not listening when I told him about my symptoms? Rarely ever get a migraine. RARELY. And Imitrex is not supposed to be given to people with a complicated migraine condition because of the risk of stroke. Idiot.
"I just don't diagnose anyone with MS unless they have at least 9 lesions," he said. "You only have 4. Not impressive."
Well, la-di-frickin-da! My brain didn't impress him!
He threw around the McDonald Criteria for diagnosing MS. I'm familiar with that. The only case in which 9 lesions are required is to diagnose the primary-progressive form of the disease, most often seen in men, and very hard to treat. Thank God I don't have 9 lesions.
I gave up. I felt myself giving up. I felt myself beginning to blame myself for everything. My heart was in my shoes. He said he would show my films to the MS specialists to get their opinion, but that he was sure it was nothing.
"Well, I was supposed to see an MS specialist today," I said. "That's why my doctor sent me here."
"They're quite busy," he said. "They only see patients on Wednesday afternoons. We're really more of a research facility, not so much patient care."
He started asking about the different medication allergies I've developed, too. "Well," he said, "it seems you are allergic to most of the things I would prescribe. We're doctors. We write prescriptions."
Again with the smugness.
I wanted to pick up something large and beat his head in. Instead, I gathered my films and left. I held my tears in until I got home and called my husband. I felt shell-shocked, stunned, as though I'd been more than condescended to, as if I'd been called a liar. And I'm left with no diagnosis, no treatment, and weak legs. I had a good cry on the phone with my husband and consoled myself with a glass of water and a granola bar. Then I called my best friend who nearly died before a doctor finally figured out what was wrong with her - lupus. She gave me a talking-to and told me to call my internist and make an appointment. "Don't get discouraged," she said, "get assertive." I needed that pep talk.
After I'd made my calls, I went through the mail. I got my acceptance letter from American University, where I should have been today. They want me in their program. They liked my writing samples and my letters of recommendation. I'm sure that my grades helped, too. I'm no slouch.
The news was good but didn't have as much of a "WOW" impact as it would have under different circumstances. Sure, I'm glad that I've been accepted. It's an honor. The fact of the matter is that at least twice a week, I'll have to drive to DC to attend classes after working all day. I worry about that, particularly with the way my legs have been. But I know I can do it. I know I'd be good at it. I'd like to be published more and would love to teach at the college level. This degree would get me there.
I just need to take a deep breath and believe in myself enough to do it.
But right now, I'm pretty angry at all doctors. I've run into some really bad ones who have very little interest in me as a person. They would rather hand out meds and experiment on me than to really listen and get the diagnosis right.
The bottom line is that I want my legs to keep working so that I can get where I'm going. I need to do something positive for me, like this program at American. But I'm scared of getting halfway through the semester only to find that I can't handle walking all over the campus in the cold, or that I miss classes everytime there's a bout of bad weather. My balance is so bad, even on a good day, that walking on ice and snow is just about impossible. I really don't know what to do.
If you've read this entire post, you may think I'm a big cry-baby. I assure you that I'm not. I'm pretty strong, I think. I handle a lot every day of my life. But some days are just worse than others. Today was one of those days. A little from column A, a little from column B.
Ok, a whole lot from column A.