Seeing Damn Straight!

I can see, therefore I am free. With my vision restored, I have regained my independence. I can’t express how grateful, and relieved, I am. After months of experiencing double or blurry vision, with all the attendant side effects, I got a clean bill of vision health today from my neurological ophthalmologist specialist. Overseeing my case all the while was my stroke neurologist, who’s been there for me since my stroke 16 years ago. He persisted in following every path to determine a cause. He listened to every detail, every clue, every nuance I could provide and in so doing provided a classic example of doing less pontificating and letting the patient guide the diagnosis.

There’s a maxim in medicine that goes something like this: When you hear hoofbeats, think of horses, not zebras. In other words, consider the expected rather than the exotic. We know why they call it the “practice” of medicine. Because each patient presents with a unique set of variables, it becomes a guessing game of trial and error to coax a diagnosis. In my case, it was my stroke that was the red herring for the practitioners who tried to tie it to my vision problems.

Just as my double vision shifted from eye to eye, so too did my diagnosis, from one presumed abnormality to another. First it was decompensated phoria, or possibly an ocular ischemic stroke. Then it was ocular myasthenia gravis for which I began treatment. Now it has shifted again to what appears to be related to an inner ear infection. This makes sense to me as one constant I have experienced is a lightheaded sensation similar to being on an elevator. As I alluded to earlier, it was the guidance of my stroke neurologist that helped me navigate this minefield. Given our history together, I used to joke that I got the white glove treatment because I was his “special” patient. But the reality is this is how he treats all of his patients. He encompasses all of the compassionate qualities that I evangelize for in integrating humanity into the science of medicine. Would that we could clone him.

The Practice of Medicine: Diagnosis by Elimination. OMG!

As a kid, I would sometimes cross my eyes while being silly with my brothers. My Mom would say, 'If you keep making that face, it will stay like that!" I could never keep my eyes crossed for longer than a few seconds, though, because it was too uncomfortable and rendered me helpless.  Recently, July 25 to be exact--more than eight weeks ago--and yes, I am counting--I awoke with double vision; the medical term is diplopia. In my particular case, it is called binocular diplopia because if I cover either eye, I have single vision, as opposed to monocular diplopia where double vision occurs with only one eye.

Diplopia is described as a multidisciplinary monster involving a cross-section of medical providers. I am learning this firsthand. I have three specialists in the neurology department alone: stroke, ophthalmology and neuromuscular. These appointments are in addition to multiple visits to my primary care and a consult with an endocrinologist.

The initial armchair diagnosis for my diplopia was a hard hit to the back of my head. While out at a restaurant celebrating my 16th Homage to My Hemorrhage with my parents and Jim, I threw my head back in laughter and hit the corner of the molding. The thought was this could have caused some bruising to my ocular nerves. Of course, I felt you couldn't plant a bigger L for Loser on my forehead, but was hopeful it would resolve as it healed.

My initial thought was that my condition was related to the hemorrhagic stroke I suffered 16 years ago. That assumption has proved to be a red herring. Aside from contacting my neurologist, I took to the Internet, hoping to get some clues to this new symptom. The top of the search results was scary: tumor, cancer, stroke, Multiple Sclerosis.

The tally so far:
·         Three visits to ER (one by ambulance)
·         Two hospitalizations
·         Two Cscans
·         Two MRIs
·         Two EKGs
·         Two EMGs (a single fiber one scheduled next week- SFEMG)
·         A PET scan
·         An Ultrasound (with follow-on biopsy)
·         BP monitoring cuff for 24 hours
·         Multiple eye tests and blood work evaluations
·         Multiple doctor visits
As I did before with stroke, I have become proficient in the medical terminology of my condition. At first, my neuro-ophthalmologist thought I had decompensated phoria, where the eyes are misaligned and can no longer fuse the vision into one image. She measured me and prescribed prisms for my glasses. The prisms worked only for a few days because my double vision kept switching from one eye to the other and the measurements changed. Now the thinking is I have Myasthenia Gravis (MG), a neuromuscular disease that typically is systemic. There is also a less common form of MG that affects only the eyes, which is called Ocular Myasthenia Gravis (OMG). OMG is exactly  my sentiments!

One specialist in neurology suggested I do what all her patients do: use an eye patch. This, she assured, would allow me to function normally. NOT. I already suffer from hemi-paresis, neuropathy, and my most debilitating deficit--Left Neglect. I have learned to use my eyes to compensate for what my brain ignores--the left side. When I wear the eye patch, I get dizzy and become light-headed, which accentuates my imbalance. I am in effect compounding my impairment.

For the second time in my life, I have been hospitalized and discharged as etiology unknown; that is, they have not been able to determine the cause or origin of my condition. I am an enigma. I take no comfort in being some kind of arcane puzzle. I have come to appreciate what the practice of medicine truly means. I don't have a diagnosis; hence, there is no treatment plan. A diagnosis will evolve through the practice of elimination.

The good news, so far, is that many bad things have been ruled out. Still, just by living through this my life has been altered. The professionals are perplexed. All my tests for OMG have been negative, yet clinically I present with the disease. My hope is that my diplopia resolves soon without explanation. If this happens, the medical diagnosis will be a virus, as that is the catchall for unexplained recovery.  Oh my God, can this be true that I may have a diagnosis called OMG? The irony of this possibility makes me LOL!

“Every day is a gift” might be a tired cliché to some, but for me, it is the way I live my life. Each day I unwrap the present with all the wonder and excitement at the possibilities each day holds. What I took for granted was that being able to literally see the day was part of the gift. This at times has eroded my positivity, but I have done my best to find the humor. I told Jim it was almost like I was cheating because there were two of him. When out with friends I joke that I have my own entourage because I see twice as many of them. And now the cup is no longer half-full, it’s full, because there are two of them.