I've not yet told the story of my journey into the world of MS. Hang on. This is gonna take some time. And I'm only talking about developments over the last five years! But by writing this I hope to help others understand the challenges involved in just getting an accurate diagnosis of this chronic incurable autoimmune disease. So hang tight and thanks for your patience as I detail the crooked path that brought me to today.
In 2009, I faceplanted, sound asleep, onto the keyboard of my laptop for no good reason. Right in the middle of a very active teleconference with one of my editing clients, in fact.
How does this happen? I was sleeping eight good hours a night, waking up exhausted, and moving about like a zombie through my day. Working in a sedentary profession as a coach, editor and writer didn't help matters. I began to need naps almost every day and even found myself wanting to crawl onto a park bench during the middle of what was supposed to be a brisk walk because the drive to sleep had become nearly irresistible.
Sound familiar? It is if you're the working mom of two active children. No one, I REPEAT,
no one thinks that that kind of exhaustion actually has a physiological explanation outside of being overbusy and underslept. This is the price I pay for being a working mom, right? The price of feminism?
So I ignored the signs, didn't think anything about them until I started having headaches and woke up daily with a sore, dry throat. I'd never had headaches previously, and my husband was complaining that my snoring had become ridiculous.
I talked to my doctor about my excessive daytime sleepiness, and he gave me a pulse oximeter to take home. It's a little device like a clothespin which you place on your finger when you go to bed. It measures the amount of oxygen saturating your blood in increments all night; it automatically stores that data on a chip. The doctor then downloads that data and looks to see if your blood oxygen ever dropped below what is consider the normal range during the night. If it does, it might signify a number of things, including the presence of obstructive sleep apnea (OSA) or upper airway resistance syndrome (UARS).
If you don't treat either problem, you run the risk of suffering from elevated blood pressure; aggravating a preexisting (or pre-emergent) chronic health condition like heart disease, stroke, depression or diabetes; or enduring an endless fatigue that makes it difficult to manage the usual and sundry tasks of everyday living like housework or grocery shopping, potentially leading to an unfortunate path to obesity over time.
Also, problems with either condition, if left untreated, could lead to a slow whittling away at your ability to think clearly, make sound decisions or articulate yourself.
Great, just great.
My nocturnal oxygen reading showed some evidence of oxygen desaturation while I slept, so I was sent to a sleep lab to take two tests. The first was an overnight split-night polysomnogram to rule in (or rule out) OSA. If you have obstructive sleep apnea, you are likely waking up all night without realizing it because your body is trying to get oxygen into your bloodstream even as your upper airway is collapsing in periods of 10 to 30 seconds (or even longer). Your sympathetic nervous system kicks in, you sleep a more shallow sleep, and your body works overtime during what should be a period of rest to regain lost oxygen.
My second assessment was a series of short daytime naps called the Multiple Sleep Latency Test, which is used to differentiate excessive daytime somnolence as either the result of narcolepsy or idiopathic
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| Distinctive EOG waves during REM sleep |
hypersomnia (or neither). If you fall asleep within a short nap period AND experience REM sleep, and this happens more than half the time, you're a candidate for narcolepsy. If you fall asleep within a short nap period but DON'T experience REM sleep and it only happens less than half the time, you're a candidate for idiopathic hypersomnia. In either case, there's not a lot you can do to fix the problem as researchers are still trying to figure out the mechanisms that lead to this failure of the brain to regulate both your sleep and wake drives.
So if you are lucky and don't pass the MSLT, it's "diagnose, and adios." More or less.
I use this phrase here for a reason. When MS was first being widely diagnosed, that is pretty much what happened to patients... they were given their diagnosis and that was it. Fortunately, the National Multiple Sclerosis Society has this to say on that matter in 2014:
At any rate, this was back in the days before interferons were discovered to have immunomodulating properties that could help halt the progression of MS. Relating to my initial point about excessive sleepiness... an MS diagnosis back then is similar in many ways to a narcolepsy or IH diagnosis now... not a lot of options available. A couple of drugs, little research funding, and rare frequency in the population. You're on your own.
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Malampatti Scores show
the wide range of airway
shapes and capacities,
from wide and accessible
to narrow and crowded |
But I digress. When I got my results from the sleep clinic, I wasn't surprised. I didn't have obstructive sleep apnea, but UARS, which is a kind of precursor to OSA. It's caused by, among other things, having narrow airways as well as retrognathia (a soft chin and overbite) and it's aggravated by both my preexisting and worsening gastroesophageal reflux disease (GERD) and the postnasal drip caused by my allergies (which are all related to toxins, chemicals, pollutants, perfumes, etc.--that is to say, nothing
natural like pollen, so there are no shots I can take for relief).
The results for the MSLT were inconclusive, however; I had some unusual arousal patterns and alpha intrusions that might have been the product of some medications I was taking (and continue to take) for a separate health condition. We resolved to treat the UARS with an oral appliance, which mechanically moves forward the bottom jaw and thereby opens up the back of my upper airway enough so that I can breathe freely without snoring. It helped a bit: I stopped snoring, the headaches and sore throat went away, and my postnasal drip became more or a less a thing of the past now that I had the physical assistance to naturally clear my own airways as a result of using the appliance.
But I was still tired. A lot.
Fast forward to the end of 2010. I decided to close up shop working independently as an editor/coach and focus on my own writing and more time with my family. I was still tired and, even with exercise and diet, my energy levels were stuck at a plateau of about 60 percent of what they used to be. Was this what it felt like to be 45? Were people really this tired at middle age? I couldn't accept that and felt that something wasn't right even if I couldn't put my finger on it.
I decided I just needed to make a big change. A career change. Away from sedentary, quiet work that demanded a lot of emotional and intellectual effort, which seemed to suck the life out of me. I wanted to move toward more active work in which I engaged with others live and in person. Work that made me feel like I was making a meaningful difference. Work that employed what I suspected was still a top-notch intellect beneath all the fog I had accumulated.
Two years later I was back in school, pursuing a credential in sleep technology as an RPSGT: Registered Polysomnographic Technologist. All the personal interest and time I'd invested in learning about sleep inspired me to go into this line of work because I knew first hand that there wasn't enough good writing out there about sleep disorders. Or, the information that was out there either exoticized the more rare kinds of disorders (like REM Behavior Disorder) or cloaked disorders of sleep in too much medicalese. I saw a niche for myself in writing content about sleep health for ordinary consumers and decided this would be the perfect career change for me: it meant I could help people, interact actively and in person with others, and combine my new sets of technical skills with my established set of communications skills.
I would fast forward to late fall of 2012, but for me it was more of a slog. Thirty hours of homework a week, and I was wiped out beyond capacity. On top of that, I began to have problems with my handwriting (I'm old school, I still handwrite my notes), with memory, with learning, with numbness in my writing hand (to the point I couldn't pick up a cup of coffee) and the fatigue was utterly off the hook. Not enough coffee in the world, my friends. Not enough.
On top of that, there were stressful things happening on the home front with both my parents and my husband's mother (physical and mental health issues). And then, a week after I'd completed my first fast-walk 10k (a time when I was probably in the best physical shape I've been in a good long while), I discovered (and, thankfully, treated) a sudden major increase in my blood pressure, going from 120/70 to 190/110 at one point.
Not long after, I began to get "chilly willies," a kind of sweeping, tingling sensation that swirls across the
muscle fibers of one's body. These were mostly located in one or two spots, and I had had them before, but didn't think anything of them until they began to happen all the time and over new places they'd not affected me before. And my left leg began to tremor when I stood. This was something else I noticed years ago, but just ignored. As an isolated symptom, it came and went and didn't ultimately impact my daily life. At one point it stopped entirely, but by February of 2013, it was back with a vengeance with the chilly willies.
At that time, I also began to notice issues with speech (word recall and pronunciation) which began to make me worry. I'm a writer who has done a lot of live, and often impromptu, readings of both fiction and poetry; I have also lectured and make presentations before groups, taught classes and led seminars. Was I having a stroke? Was it Parkinson's Disease? What? What? What?
Spring break came at the end of March 2013, following finals and my participation in a regional sleep technology conference which, it should come as no surprise, I kept falling asleep at during sessions even while plying myself with cup after cup of coffee.
I went to the doctor; he did a variety of assessments and asked me a boatload of questions. He's an amazing doctor. If everyone had my doctor, we would all be so much better off! Then he promptly scheduled an MRI for me the following day.
I was nervous and decided after that 45-minute trip into the White Tube of Death that afternoon that, if I ever had to go into that funhouse again, I was going to need some serious meds to do it.
Not 24 hours later, my awesome doctor called me personally on my cell phone. Let me tell you, as much as I adore my PCP, as much as I really enjoy chatting with him at the clinic during physicals and strep throat screenings and flu immunizations, I really don't want to hear his voice on the other side of my personal cell phone.
"Your MRI suggests you have lesions on your brain
consistent with multiple sclerosis."
I was at a local coffeehouse reading over stuff from the last semester, desperately trying to cement into my brain the information of multiple technical classes because I really began to feel my learning ability had slipped to an all-time low. I still had another semester to go, and I was losing my grip on important things just as I was heading into "clinical season," where I would be working at a local hospital sleep lab learning on-the-job skills. Yes, you have it right... I was studying on spring break, worried about my ability to be able to master the skills of this challenging new career. My grades in class were fine, but it's a different thing working in the real world, with real patients with real problems like atrial fibrillation or diabetes or COPD. I began to doubt I had the capacity to finish out the program I had started with such enthusiasm and hope, and now my doctor was telling me I might have multiple sclerosis.
I told him, jokingly, that he had it wrong. I told him he was supposed to call me back and tell me I was just being a hypochondriac, that I should just buck up and admit that going back to school in my late 40s was a bit more than I could handle. Maybe a therapist would be in order.
Being the Most Awesome Doctor on the Planet, he hooked me up with the Most Awesome MS Neurologist on the West Coast, who just happens to practice in my city. (I can envision a great comic book series forming on the basis of this concept. Doctors wearing white capes!)
She and I consulted over symptoms, and we ran tests. I had a spinal MRI (complete with a visit from my new friend, Ativan). They took vials and vials and vials of blood. I sat in front of a TV screen and stared at wiggling black and white cubes until I thought my mind would explode. I had eye exams that looked intensely into the backs of my orbs in a way I'd never experienced before, and
damn if I could even pronounce the name of that procedure even now, even with perfect speech articulation and word recall. They poked my wrists and forearms with electroshocks to see how I would respond. I had a spinal flouroscopy, in which they drained tubes of cerebrospinal fluid from my back under the aid of a visualizing device. I had a whopper of a spinal headache three days later and missed one night of my residency. Needless to say, my worries about failing in my not-quite-finished new profession resurfaced. It was weeks before I would find out anything, so you can imagine I was a bit of an emotional wreck during these very busy days last spring.
Some good news came of all these tests. We isolated the wrist pain as a combination of carpal tunnel syndrome and arthritis through tests from an orthopedist. They also confirmed that I didn't have any optic nerve damage; I'd had another symptom, blurry vision, which I thought at first to be caused by good ol' old age and computer overuse... instead, my blurry vision was not a change in my vision at all, but a side effect of systemic inflammation. Blood tests eliminated a host of other conditions, like lupus, fibromyalgia, Lyme's disease and other chronic illnesses which can easily mimic MS. And my neuro, acknowledging my fatigue as real and understanding my fear of not making it through shift work because of it, prescribed to me one of only two medicines available to treat narcolepsy: Provigil.
Oh. My. God. [Cue the choir of angels on high.]
My neuro is not only a superhero, but she is also a saint. Provigil has truly given me back my ability to stay awake.
However, examination of my scans showed my brain salted with little "white spots" while sporting a couple of more prominent plaques or lesions near my hypothalamus (which regulates, guess what? sleep drive!) and near my right frontal lobe (the section that regulates speech, judgment, intellect, decision making, cognition, risk assessment, communication, etc.). That side of my brain was also just plain bigger than the other.
They also found something called oligoclonal banding in my spinal fluid, which is pretty direct evidence leading to a positive differential diagnosis of multiple sclerosis. Only with MS do you find o-bands in the spinal fluid. Think of them as the trail of popcorn that Hansel and Gretel leaves behind when they go into the scary dark woods, not suspecting a future that involves a candy house, a witch and a big-ass oven.
That was May 17, 2013. DX Day. But as I continued to have conversations with my neuro and my PCP and began to do some of my own research, just to understand this disease and what I might expect, I began to look backward... to symptom clusters going as far back as my late teens and early 20s.
I might have been diagnosed at age 47, but I have a sneaking suspicion that I've had this for a lot longer than a couple of years. There are connections one could make.
- Try this on for size. I've had two cases of mononucleosis, at age 16 and again at age 19. Mononucleosis is related to Epstein Barr Virus, which is now being linked to MS. So is shingles, which I had 12 years ago, and which heralded an odd metabolic problem I had which we corrected with a high protein, rice and vegetable diet.
- I came of age in the Pacific Northwest, which is the location of more MS patients per capita than any other region in the US. Apparently, coming of age here is of particular significance.
- We PacNWers are infamous for having vitamin D deficiency, thanks to low sunlight for much of the year. While I haven't had low D in the last 15 years, who knows what my vitamin D levels were like growing up?
- My parents were heavy smokers. Cigarette smoke, it turns out, could be a compelling trigger for a multiple sclerosis attack or onset.
- I have two cousins and my mom has two cousins who have (or had) multiple sclerosis.
- I remember bouts of terrible fatigue in my 20s... I would be commuting in Chicago expressway traffic at 6pm and have to pull to the side of the Kennedy--while cars and trucks screamed past me going 80-- in order to take a nap, otherwise I would've fallen asleep at the wheel.
- Those creepy crawly sensations I ignored previously? They took place at the same time as the leg tremor I had also ignored previously. And that was a time in my life when I recall being very, very, ridiculously, insanely tired all the time. We were spending a lot of time at the vacation home we built up north back then, and the 2-hour trip I occasionally took solo from home to the beach place was often interrupted by a quick roadside nap at the casino about halfway up I-5.
- Every intellectual project I have ever dumped has always been on the heels of a long spell of inexplicable fatigue.
Now I know that, while I did have UARS, I never had idiopathic hypersomnia (idiopathic, as a rule, means mysterious or unexplained).
It was MS all along. Not anybody's fault, I might add. I was not having electrical shocks buzzing my toes or sweeping parasthesias or a leg tremor or strange word recall or speech dysfunctions at the time. Who would've known to look farther than a couple of sleep studies and some sleep hygiene recommendations?
So here I am not quite a year later. Yes, I completed my allied medical program, got my certification, passed my board exam, found a job and am now working as a polysomnographic technologist two nights a week, praise be to Provigil, great doctors and the determination to pursue this new path while I can. My employer knows about my MS but my direct supervisor doesn't. All my boss and coworkers know is that I really love this new career helping people and they seem to think I'm doing just peachy. So while I could lament this new "normal" that is shaping my reality every single day, instead I focus on being the best at my new job and try not to stress too much. It helps that I love the people I work with and feel very supported and appreciated as a sleep tech. I don't want their sympathy and I don't need accommodations. I just want respect.
And I remain positive, because I can. I have no outward symptoms and no disabling issues (aside from some cognitive challenges which are more a nuisance to me than problematic to anyone else).
It turns out I have two very close friends who have MS, and they are functioning individuals, working mothers with challenging jobs and athletic hobbies and a drive to live to the fullest. No small thing, walking among these other quiet superheroes in everyday life.
Also related: of all the demographic groups to be DXed with MS, the ones who will probably get away with the lightest "sentence" are just like me and my two friends--white women in their late 40s who can recall prior patterns of symptomology over periods of time. I can, and what this means is that my disease progression is probably very very slow. For my form of MS (relapsing remitting), the worst progression occurs earlier rather than later. I may be safe from major disability given these odds, and will likely have the same life expectancy, perhaps even the same quality of life, as I would have had I never been DXed. I'll just have to live with these annoying little symptoms and a lot of meds to keep things stable.
Easier said than done, but I'm up for it. Progression is the name of the game, you see; halting, even reversing MS, will make a difference, even if there's no cure or prevention for now.
I still have lightning bolts bedeviling my feet, I still have parasthesias and leg tremor and now I have
migraines. Stress and sensory overload are two major triggers, I know now. My head will tell me right away, with a strange sensation I feel-hear (but don't really hear) in my head, like cellophane crackling, and the odd feeling that my head is covered in a bazillion tiny July 4th sparklers.
I also get odd sweating that might be a symptom or it might be a side effect of medication (a whole new area of mysteries to unfold!). The fatigue continues to always be a concern, but 9 days out of 10, I am functioning at 80 percent of capacity (or better). Special wrist guards are helping to delay any need for surgery in my wrists. Meditation and stress management help to keep other symptoms at bay.
But sometimes life is just going to be messy, and so I've also learned to surrender to the reality that "pushing through" MS is not really an option. Much better to put your feet up, drink some water, and let the symptoms pass. This is not a disease of wills, it's a war between my central nervous system and my hyperactive and invasive immune system. I don't really have a dog in the fight, not one that has a bite anyway, even though its my brain tissue and nervous system being held hostage on the battlefield.
MS doesn't have a cure.
You can't throw some radiation or chemo or surgical procedures or diet and exercise at something like MS and fix it. You learn to live with it, because that's all there is, except for the other alternative which I won't even engage here.
And so I live with it, hoping symptoms don't worsen, practicing everything I can to achieve optimal self care to stay the course, getting help when I need it, letting go of those things and people in my life who don't serve the purpose of stopping disease progression.
And I wait for a cure. It could happen in my lifetime.
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Thanks for reading.
