I woke up at 5:12 a.m. today with the uncontrollable urge to stretch my limbs. I stretched, and as usual my muscles all contracted at once, like a collective spasm. It’s frustrating and not at all therapeutic like you’d think a wake-up stretch should be.
But this is normal for me now, and most of the time it leads to a charlie horse style cramp at the base of my neck. That clenching is always followed by a pulsing and whooshing of blood in my head that gives me an intense headache. I’ve never actually timed it, but if I had to guess the headache lasts anywhere between 5 and 15 seconds. When the pulsing calms, the headache leaves too.
That lovely little experience is then followed by what I call leg vibrations. My legs look fine, but inside it feels like they’re buzzing or shaking very rapidly. If I could draw, my artistic representation of the experience would look blurry, like a tine on a tuning fork that’s just been whacked.
After several minutes the vibrations quit. This morning, for instance, my left leg wrapped up its shenanigans just a minute or so earlier than my right leg. While I waited for the odd sensations to dissipate, I had the thought that I should log these things in my Fibro Mapp app.
So I did.
While the vibrations are weird and it’s annoying that they sometimes wake me up from sleep, they don’t hurt. That has made them a back-burner symptom for me. But since I’ve been Googling everything related to multiple sclerosis lately, I was like “Why not see if this could be connected too?”
MS isn’t the only explanation, of course. And I do wonder if my nortriptyline prescription could be a culprit. Even though I’m on the lowest possible dose, it can cause some MS-like symptoms according to Physician’s Desk Reference. That alone isn’t enough for me to bail on a potential MRI though, because, plenty of my nerve symptoms predate my starting nortriptyline in July.
I’m not sure of anything. Basically just thinking out loud here, because I got notice from my primary doctor’s office yesterday that she has already sent the referral for me to go to the MS Center at Illinois Neurological Institute in Peoria. Consequently, I’ve kicked up my overthinking habit a notch or two as I wonder if the hour-and-a-half drive one way and all the subsequent visits and hassles will be worth spending my precious, precious spoons.
Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember.
And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.
It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself.
Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”
Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…
Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.
Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”
For me, fibromyalgia is an undiagnosis*.
At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.
When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.
On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.
*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.
So, where was I? Or rather, what part of the story to tell next? This is not a linear tale, if you hadn’t noticed.
It was Tuesday morning that I contacted the folks at Illinois Neurological Institute about being evaluated for MS. That was after the Walgreen’s incident where I had to lift my leg into the car and also after a few casual “Have the doctors ruled out MS yet?” conversations. But it was before I recalled any of the episodes I detailed in Part 1 and Part 2 of this series.
“Before we can see you,” the representative from INI explained, “we’ll need a referral from your primary doctor and all of your records including lab work, scans, exams. We need someone from that office to call us so we can fax them a form to tell them what to fax back to us.”
“Um, OK. So first step is just to have my doctor’s office call you guys?”
Great, I thought. There are about four too many steps for it to happen without my having to micromanage the whole damn process. Fuck. Fuckity fuck.
With the phone to my head, my laptop battery dead, and no paper nearby, I pulled a leg of my pajama pants up and wrote the needed info on my knee.
My primary doctor’s office said she would be out until January 4—which meant a whole week to second-guess myself. Of course, I started immediately.
See, when you’ve seen as many doctors as I have and you’ve suffered through dozens of medical tests that all come back negative, you start to wonder if you’re what’s wrong with you. I asked myself if I was being ridiculous and dramatic for wanting to see MS specialists.
Will it be worth the trouble of getting my records to them, traveling to Peoria, submitting myself to more tests? And what about when all of those tests come back negative? Will it have been worth it then, or will I wish I had just accepted my circumstances?
That’s when I decided to visit MSSociety.org and read some patient stories. They all talked about problems with vision, and I remembered that this was the thing that made me decide not to ask my doctor about MS tests several months back.
I have never had problems with my vision. I know it says that 3% of patients don’t have them, but I still don’t think… Oh. My. Shit.
In the middle of that thought, I remembered that time in 2005 when I was watching TV and there was a hole in my vision. And because I’d linked that moment to my vision-blurring migraines between 2011 and 2013, those memories washed over me too.
What if the start of my decline wasn’t in 2014? What if it goes all the way back to 2005? What if those were episodes of optic neuritis or whatever-the-hell?
From 2011 to 2013, I worked in a gray, dingy warehouse-turned-headquarters for NAPA Balkamp. (Nothing about that job suited me, as it turned out. However, it did help me identify my ideal place to work. That’s something, I guess.)
One day in July 2011, I went to my boss’s office a little unsteady on my feet. “Is it OK if I go home? I’m not feeling well.”
“Whoa, you look pale.” He looked up from his computer. “Are you OK?” I was pretty sure I looked ashen and sick because I was terrified out of my mind about what was happening, but I didn’t want to sound crazy or seem weak.
“Some weird stuff’s going on with my vision. I just want to rest my eyes,” I explained.
After getting my boss’s approval to leave for the day, I called Dan and asked him to pick me up from work. I’d just have to leave my car on the lot overnight. “I’m seeing weird spikey squiggles and parts of my vision are blurry, Dan. I don’t think I can drive.”
He told me he was on his way.
I tried to keep my shit together during the fifteen-minute wait for Dan to arrive, but it took some effort. I had reservations about walking down the stairs and down to the lobby on my own. (That place only looked ADA-compliant from the outside. Inside was a different story, and riding in an elevator wasn’t an option.)
I clung to the railing as I made my way to the ground floor while trying pretty hard not to look like I was clinging to the railing.
Rather than wait in the lobby for Dan to pull up, I went outside and stood in the front parking lot. It was raining, but I didn’t want to go back inside. I just kept thinking that I didn’t want to pass out in front of anyone, because that would be so embarrassing.
I anxiously looked down the road for Dan’s Jeep. How long have I been waiting out here? An hour?
My left arm got tingly from my bicep to my fingertips. I shook it like you’d shake an arm that had fallen asleep, trying to return some blood flow. It didn’t help.
When the vision problems dissipated, they left behind a monster headache. Resting made me feel better, and over the next couple of days I was feeling back to my old self. I didn’t make a doctor’s appointment like years earlier. Instead I did a Google search for something like “squiggly lines in vision.”
I found images like the one above, perfectly depicting what I experienced. Sharp, colorful squiggles and blurry spots that prevented me from reading and writing. All of them on web pages about migraines.
So that’s what happened. A migraine. Whew!
I would have several more of these episodes periodically over the course of a couple of years. When they happened at work, I’d turn my desk lamp off and close my eyes for a few minutes. I even welcomed the squiggles and tingles. How sweet of my body to warn me what was ahead.
I logged the migraines for a while, you know, just in case. But shortly after I moved and began working for my current employer, they stopped. My migraine log was lost in the great moving purge of 2013 when I left Indianapolis and moved to Champaign-Urbana.
Because the migraines stopped, I chalked everything up to no daylight in my cubicle, hating my job, and eye strain. Who wouldn’t get migraines under those circumstances, I reasoned.
Something about sitting in a chair while someone combs out my tangles switches my confessional switch. I told her that Dan and I had recently discussed me going back to a neurologist—someone who specializes in MS—to ask some more questions about ruling it out.
She thought it was a good idea. “Do you remember John W.?”
“Our old neighbor? Sure.”
“He’d come home from work, and walking from the car to the front door, he’d walk just like you do now.”
“Huh, really.” I envisioned him walking up his driveway. I could see the lilted gait, but wasn’t sure if I was recalling actual history or projecting my own walk onto a childhood memory. “I didn’t know he had MS.”
“And you remember me telling you about the wife of one of dad’s cousins that I chatted with at the last family reunion? I was telling her about you. You walk like her too, by the way. She said, ‘that is exactly what happened to me before I was diagnosed.’
“And,” she added, “when I was doing hair at Phyllis’s, I had a client with MS. Some days she could come to the salon, and some days she couldn’t. On the days she couldn’t, I’d go to her house. Anyway, she reached out to grab walls and chairs and things for stability, just like you do.”
She finished up with the scissors and switched on the blow dryer.
I follow a lot of Spoonies and disability activists on Twitter. Last week, someone shared a link to a video of a person with MS walking.
I watched it several times. The hesitation and deliberation in her shuffle. The way she reaches out for the branches as she approaches them. The way it seems like that one leg isn’t so much participating in the act of walking as it is catching up to the rest of her body.
THAT IS ME.
Sometimes people ask me why no one has ordered an MRI yet. I don’t know. Disbelief in my ability to accurately report my symptoms? Blindly trusting my fibromyalgia diagnosis? Money? Insurance?
My primary doctor did refer me to a neurologist last year. He tested my reflexes, then drew numbers on my foot to test for numbness. He smacked a tuning fork and then held it to a couple of areas, asking me if I could feel the vibrations. He watched me walk up and down a hallway.
“Why are you dragging your left foot like that?” the neuro asked me. I shrugged at him. “I don’t know.” At the time it didn’t seem absurd for him to be asking me that question. Now, I’m kicking myself for not retorting, “Why the fuck do you think I’m here, asshole?”
But he wasn’t a native English speaker, and his question might have been something more akin to “Is there something not in your records that would explain this?” Still, he didn’t seem concerned that my answer was “dunno.”
He said they could perform some kind of nerve test (like what they do for carpal tunnel, I can’t remember what it’s called) on my limbs, but that he was 99.9% sure it would come back negative and some people considered it painful. It was up to me if I wanted it.
I put it off for months. When I finally consented to have the testing, it came back negative, just like he thought it would. I considered it another dead end.
Last night I was reading MS patient stories online. Random people keep bringing MS up to me lately, and I can’t get it out of my head. One woman’s story triggered a memory from more than a decade ago.
2005. I was sitting on the couch watching TV when my vision went out, partially. There was a blind spot where an actor’s face should have been. I looked at other things around the room. I blinked. The black hole was still there.
It was freaking me out, so I got up to take a shower as a way of calming my anxiety. The vision loss continued, and I started experiencing a numbness and tingling in my arm. The shower poof felt odd on my forearm. It wasn’t totally numb, but it was not normal.
I was so freaked out by it all that the next morning I made an appointment with my doctor. At the time, I was pretty healthy. I only saw him for the occasional sinus infection or whatever. He didn’t really know me.
He listened to me describe my experience without saying too much. He had a nurse come in and test my blood sugar. Then he asked if there was any chance I could be pregnant and had me pee in a cup.
“Well, you’ve got a bladder infection,” he said. “But you’re not pregnant. I’m going to prescribe an antibiotic.”
He admitted he couldn’t explain the symptoms that had prompted me to make the visit in the first place. All he could offer me was, “I don’t think it’s a stroke.”
The encounter was far from consoling, but after a couple of days the symptoms had gone and I was over the anxiety.
I had pretty much forgotten this entire episode and so hadn’t considered it might be connected to my past two years of pain, fatigue, vertigo, and falls.