That Awkward Moment When It Turns Out Your MS...Actually Isn’t

Well, so much for a spoiler alert...I won’t blame the dumpster fire that is 2020 for this uninspired title, but considering this adventure started in May 2019, I can promise you there will be zero references to COVID-19 (okay, except for that one). But since you already have a solid idea of how this article ends, you probably also don’t want me in charge of planning your surprise party, either.

An appointment with my new neurologist

Yes, late spring 2019. What a simpler time, right? It was also when I had my first appointment with my new neurologist. In the context of the exam, she commented on the swollen joints of my hands and feet and ordered a whole battery of tests; nothing else was out of the ordinary. About two weeks later, she sent an email that two of my blood tests were positive and her office would be calling me to set up an appointment.

The results of my blood test required a follow-up

Positive for what — she didn’t say — but you don’t need to be familiar with neurological disorders to know specialists never want to see you again in a short period of time because they miss you. Still, I felt far more curiosity than concern as my husband Andrew and I arrived for the follow-up.

What we learned

In my own words, here is the gist of what she told us: Over the past decade, researchers had been doing all the Important Smarty-Pants Things we expect them to do while the rest of us were busy fretting over what to order at Starbucks. This included studying something called Myelin Oligodendrocyte Glycoprotein (shortened to “MOG”, rhymes with “fog”) which exists within the brain, spinal cord, and optic nerves of the central nervous system.

Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOG-AD)

Ultimately, a theory began to emerge that the immune system in some patients who had been diagnosed with MS was actually creating antibodies that would attack these surface glycoproteins on the myelin sheath, which would then cause damage to the sheath itself — essentially mimicking MS and doing similar damage as MS, but existing as an entirely separate disease from MS. Because scientists are super uncreative when naming things, somebody voted to call it Myelin Oligodendrocyte Glycoprotein Antibody Disease (MOG-AD). The next Smarty-Pants Thing on the agenda was figuring out how to determine if someone had MOG antibodies in their blood, because - and this is VERY IMPORTANT — research implied testing positive for MOG antibodies meant a person did not have multiple sclerosis.

Surreal. That’s how it felt the moment I was pretty sure I knew where she was going with this...

The blood assay test to detect MOG antibodies

We next learned that in 2018, Mayo Clinic had announced the development of the first blood assay test to identify these MOG antibodies in a patient’s blood, something my doctor knew because she had completed her neurology fellowship at Mayo that same year. The battery of bloodwork she had ordered 2 weeks ago had included this MOG antibody test. And my results were positive—so I did not have MS, and I never did.

Finding out that I never had MS in the first place after 10 years

I don’t know what the “normal” response under these circumstances should have been, but mine was to say something to the effect of, “Yep, that sounds about right.” I also remember shaking my head and laughing to myself under my breath in a mildly deranged fog (rhymes with “MOG”) because it just about figured that I’d spent the better part of the last 10 years antagonizing my phobia of needles by sticking them in myself for no reason whatsoever several times a week to treat a disease I didn’t even have.

My husband's reaction

My husband Andrew, however, was handling the bewildering change in his new wife’s condition with the smooth efficiency of a neurological veteran, which was remarkable given the man is so healthy he’s literally never been on an antibiotic (I know). While my disoriented thoughts were focused on trivial things like all the MS-related t-shirts I’d accumulated since 2010 that would now have to be donated to Goodwill, he was asking all the sensible, practical questions regarding the implications of a MOG-AD diagnosis replacing the familiar MS one.

The plus side: the possibility of predicting a relapse

Luckily, it wasn’t all bad: With regular testing to gauge the number of MOG antibodies in my blood, we could theoretically confirm a relapse or perhaps even predict one before it happened, because the limited research showed the antibody titer in my blood would increase if an attack was imminent — a development MS patients can currently only dream of. There wasn’t much known about progression, treatment, or outcomes yet, though Johns Hopkins and Mayo Clinic were actively doing research in the U.S.

Staying on my existing MS therapy

She wanted to keep me on my existing MS therapy for now; primarily because with no nationally agreed-upon treatment protocols for such a new disease, insurance wouldn’t cover any medications for me except ones indicated for MS. Very thoughtfully, she also acknowledged the complications such news would no doubt bring — ranging from the lack of available education for me as a patient, the challenge of explaining this to my kids, and how I would just confuse the bejesus out anybody without a high-level neurology degree when I said I had MOG-AD instead of MS.

That’s when she commented, “You’re taking this very well.”

Ironically, twice in the last 10 years a neurologist has offered this observation upon diagnosing me with an incurable disease. This was not a record I was shooting for.

Being diagnosed with a newly discovered disease

And I wasn’t even done yet — since the antinuclear antibody test (ANA) had also come back positive and my swollen joints indicated something more significant, I needed to be evaluated immediately by a rheumatologist. I had come to her office believing it was multiple sclerosis that was attacking my body. My husband and I left quietly holding hands and instructions to see yet another specialist, with one of us a host facility for Myelin Oligodendrocyte Glycoprotein Antibody Disease. I turned my face up to the mid-morning sun, overwhelmed at how the fresh, warm May morning seemed the same as it had been an hour ago, but I was walking back out as 40-year-old newlywed with a newly discovered, newly diagnosed disease I couldn’t even spell that my doctor had made us promise not to Google yet.