My Constant Companion

"That was scary!" I instantly jumped with a spark that shot up my spine and pierced through my heart. My eyes blinked. Nearly immovable, it took a brief moment for me to realize I was still breathing, still alive. Sleep unsettled, hestitantly I slouched back into the comfort of my pillow and cautiously wound my way to Dreamland.

In the light of day, cognition fogged as I clumsily trampled among familiar mundane motions, yet most remain unremembered.

At last evening, sitting alongside the dinner table, ready to spoon a bite of food, vision compromised as my left eye smeared over with complete blindness.

*Sigh*

Multiple Sclerosis. My constant companion; my common foe.

Mimicking MS

It is possible that the biggest neurological nightmare is being referred to a neurologist who specializes in cardiology, practices in one state while living in another, and masters the art of confusion with no conclusion. In other words: This New Guy.

My first appointment left me yearning for a do-over. He heard not a word I spoke, so I simply wanted to go back and eloquently, through a mega-phone, blurt out the highlight symptoms for him to take notice.

The second appointment wrapped me in a state of total confusion. When I exited the Stanford Neurology Clinic 18 months ago, everything made sense. All signs, symptoms, and MRI images were consistent with Multiple Sclerosis. I was shocked at the diagnosis, yet found peace. I rejoiced, having finally learned the source of my many ailments from a group of doctors who obviously took care with me.

But, This New Guy approach was sassy, rude, and indecisive, telling me lesions (spots) revealed last April were probably just from diabetes. I assured him I am not diabetic. He said, "Yes you are; it says in your chart that your insurance mailed you diabetic information." No, my insurance did no such thing (are you looking at the right chart?). The only information ever mailed to me was a denial for the repeat MRI because it was coded improperly (by This New Guy). "Well then, they are because of your high blood pressure." I do not have high blood pressure. He snapped, "You did today!" That is correct. It was slightly elevated to 130/80-ish because my pain level sloped up to 7 on the scale (and then you shouted at me). But pressure today would not account for spots that have been panging my brain for 18 months. "I guess it's fibromyalgia." I guess not (it does NOT create lesions on the brain). 

Even my blood draws proved clean, with the exception of low Vitamin D (also consistent with MS). His marked confusion was confusing his own confusion.

This New Guy finally coded properly and, during our third appointment, the updated MRI revealed more spots. One, in particular, he admitted was again specific to MS.

During my fourth appointment, he said, "It used to be when any new spots showed up, doctors confirmed it as MS." Yet, he does not buy into such line of thinking because my spinal fluid appears clean. So, I questioned, "Then, what's causing all the lesions with my symptoms (reminding him of cognitive fog, fatigue, frequent urination, tremors, breathing/swallowing difficulty, loss of fine motor skill, gait changes...the list continues)?" He checked a few reflex responses, observed my struggle to gracefully walk the hallway, then literally scratched his head and produced no answer. We already ruled out diabetes and high blood pressure. We established fibromyalgia does not progress, nor does it cause spots. He mentioned the possibility of carpel tunnel syndrome. Seriously...?!? Even though the majority of my spots are consistent with MS, his last resort was to say they are from severe chronic migraine headaches, which I have endured since reaching puberty. 

Yup. He's a quack. Never before have I heard such nonsense, but at least he threw me a bone to chew.

After humbling my pouting to take a more pro-active stance, I researched all sorts of stuff from This New Guy patient reviews to migraine headaches. I discovered that recent studies DO suggest migraine with aura (my kind) CAN cause white brain matter lesions. However, it is not evident they cause the multiple symptoms I experience. 

Excerpts from the article White Matter Lesions in Migraine by Timothy C. Hain, MD, Chicago IL., May 2016:

 "Hamedani...(2013) suggested that [lesions] are...not especially progressive in adults..."

"These can be and often are confused with white matter lesions due to multiple sclerosis..."

"We have seen several patients in whom we believe MS was misdiagnosed, based on observation of white matter lesions."

"While these lesions can appear alarming in persons with migraine...generally they are not associated with any neurological disturbance. According to many authors, the clinical significance of these lesions in migraine is unclear (Evans 2003; Dahlof 2005; Bashir et al, 2014). This was also the conclusion of Palm-Meinders et al (2012), who reported that there is no cognitive decline."

Since I have progressive lesions and cognitive decline, along with neurological disturbance, it appears chronic migraine is not the sole criminal in my case...or is it?

An article in the Neurology journal (2013) claims "the researchers found that people with migraines ran a higher risk of brain lesions, abnormalities in brain white matter, and altered brain volume. The latter two have been associated with...multiple sclerosis..."

The billion-dollar question then: are my lesions migraine mimicking MS, or are they MS mimicking migraine?

The idea that migraine lesions may be mimicking MS symptoms is curiously real to me. So many puzzling questions to disect and scatter-brained answers to piece together. Aren't white matter lesions still lesions, regardless of the mechanism causing them...? Shouldn't there be concern as to what the short- and long-term effects of such lesions are...? Is a Swiss cheese brain fully functional...?

Oddly, This New Guy may or may not be on to something. So, I won't fire him just yet (even though his reviews were less than stellar). At the close of our last appointment, he said, "Let's just see where this goes," then prescribed a medication (topamax) for me to try. My final resort is to settle on what makes sense and for now accept that I have both: MS with lesions causing debilitating symptoms AND chronic migraine with white matter lesions.

With an ice-cold can of Coca~Cola and a six week follow-up scheduled, I will allow time to eventually solve this mystery. Until then, I will continue to be an antiquated neurological scribble who loves to color.

Silence, To Honor

Yarn Work

Since committing to making an altar cloth, I temporarily set aside the lace project to hone my basic crochet skills. I have been doing plenty of yarn work the past few weeks that will all be donated to the refugee center in Boise: soft, warm afghans (for children) and extra thick pot holders (to accompany kitchen cooking sets). I also crafted a chunky cowl scarf for my oldest daughter.

The angle and speed with which I stitch does not seem to compromise fine motor ability, so maneuvering the hook has been therapeutic for my "silly" hands. Ultimately, my crochet time has been a super fun venture, boosting my skill ego while bringing me one step closer to a finished altar cloth.

Body Tremors

Last night will be pegged as one of the worst episodes in the history of my body tremors.

It was a slow, but steady pace of being on my feet all day long: the usual morning shower, a journey to the library, grocery shopping, play time with my kindergartener, light house cleaning, a special Family Home Evening where the missionaries came over and helped grill up some delicious grub and then we played a couple rounds of Kinect Sports bowling. The day drew to a close with some Level 1 Easy reading. As I helped my kinderboy find sight words on each page, my own sight fled. My left eye went blank. Scary! I automatically cleaned my glasses, hoping it was just a dirty lens. It was not. Fortunately, the black-out was brief, and sight restored.

After prayers and good-night squishies, I cozied on my own bed with a big sigh of relief. Immediately, the adventures of the day took their toll in the form of uncontrollable shivers, shakes, tremors, and twitches from head to toe, for near an eternity. I finally stumbled to the couch and cued some old Seinfeld episodes to occupy my mind. At one point during the tremors, I could only yawn to keep my breathing consistent. I feared I would pass out otherwise.

Eventually, I awoke. Not sure if I actually did pass out or if the body tremors wore me to complete exhaustion. Needless to say, I am feeling like an antiquated neurological scribble again today.

Spinal Tap

Here I am, just chilling in my bed, waiting for the spinal tap-induced headache to dissipate (think I'll watch "This is Spinal Tap" to continue with the day's theme...ha~ha!). The doctor instructed, "lay flat and give it a couple hours; no activity today." Wise advice. Any upright movement immediately increases pressure on my brain and invites an intense pain I have not experienced in three decades.

The last lumbar puncture I had was in conjunction with a myelogram, and both were performed with highly archaic flair. I swore I'd never do it again. But advances in technology made this go-around more comfortable. I was even able to crack a few jokes during the procedure. And through the course of conversation with medical staff, I now have "Wayne's World! Wayne's World!" tapping my brain.

I'm not sure which pain in the brain is more unbearable...

My MS Odyssey

I survived another wild launch into a 3T MRI machine, only to return in T minus two hours (and some loose minutes).

Tight spaces, such as that of a tubular MRI machine, are usually no bother to me. But when a bulky face mask is required as part of the apparatus for stabilization during testing in that confined space, my heartbeat skyrockets at a rapid pace. No amount of consolation to myself--taking deep, oxygenated breaths or calmly reminding myself that I AM a super hero--stops panic from over-riding relaxation within the initial five minutes. Hence, it has become prudent for the neurologist to prescribe a generous dose of Xanax to sustain me during the 2-hour imaging procedure.

This week was no different. The little blue pill temporarily became my best friend, my saving grace, as I prepared to enter the cold, loud imaging shuttle.

Fortunately, I had friendly technicians who successfully inserted my IV on first attempt, surrounded my ears with familiar sounds of classic 80's rock, secured my arms against the machine walls with cozy padding, and covered my body in a toasty warm blankie. The only thing missing was a pink binky.

Somewhere around the midway point I briefly dozed off, startled myself with a quick jolt, then apologized for the unnecessary snort. I was assured it did nothing to hinder the images, thankfully. Once ejected from the dark abyss, back into reality, my stomach demanded a Smashburger combo, which I nearly inhaled from starvation.

Later, the neurologist and I reviewed my updated MRI report. Although my spinal cord looks good, more "spots" exposed themselves on my brain: a couple of them appear consistent with severe migraine, while yet another is of major concern to Multiple Sclerosis.

Progression in time and space warrant the scheduling of another spinal tap, a procedure which, the first time, bruised my entire lumbar spine and twisted my dreams into nightmares. I am somewhat hesitant to do it again (especially since I have to refrain from taking any pain relievers), but understand the necessity for it.

As with all things, I will embrace the obstacles life encounters and enjoy the ride along my own personal MS odyssey...