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.
