What did I do wrong? What could I have done differently? How could this happen? 

What did I miss?

We ask these questions in the wake of local or national tragedy. We ask them when our children misbehave. We ask them when we suffer a financial loss. And we ask ourselves these questions when we hear the words:

You have multiple sclerosis.

When those words were first put onto the table during my diagnosis process,  my mind spiraled into a self-blaming frenzy. Did I do this? Did I not exercise enough? Should I have taken my mother’s warnings about vitamin D deficiency more seriously?

Maybe. But it’s not that simple. MS is pretty indiscriminate and the cause is still unknown, so instead of focusing my confusion onto my perceived shortcomings, I started to look at possible red flags that my body may have been trying to show me years earlier.

I had a pretty violent introduction to MS, but if I took away those really intense attacks in the beginning that ultimately led me to pursue answers and medical help, were there other possible warnings that I had previously ignored?

I’m not a medical professional and any of the below symptoms can be indicative of other maladies, but here are a few things I experienced years before I knew their names or of their connections to multiple sclerosis:

• Lhermitte’s Sign

This is a fun one. It’s a classic symptom of MS, but in the beginning, I brushed it off as a pinched nerve. I’ve had this happen for stretches of time more than once and it never gets any less jarring or unsettling when you move your head or neck a certain way and you feel a jolt of electricity shoot down your spine and through your limbs.

• Vertigo

A few years prior to being diagnosed, I had several bouts of vertigo that lasted about a minute or two each time (once when I was driving on the freeway!), though there was one instance where the severe vertigo lasted a full 72 hours. Each time it happened, it was debilitating. Everything was spinning, even when my eyes were closed, and I had to cling to a wall like a bat in order to walk. Doctors told me these flares were probably due to either vestibular migraines or some inner ear complications caused by a sinus infection……but knowing what I know now, perhaps this was an early manifestation of MS?

• Trigeminal Neuralgia

This symptom is only experienced in approximately 4% of people living with MS, though people with MS are FOUR HUNDRED times as likely to experience this type of pain than the general population…and I’m one of those lucky ones! This type of pain is “neurogenic” or “primary pain,” meaning it is a direct result of the disease process of MS. Some describe it as a painful twitching or a burning sensation in the face or jaw. For me, it’s like a blunt object being forcefully jabbed into my right ear. This only lasts for a few seconds when it does happen…but it’s, uh, very unpleasant.

• Possible Raynaud’s Phenomenon??? Maybe??

This one is tricky, as I don’t believe my toes turn white (***EDIT: I just discovered the very tips of my big toes turn white!***), but I do know that when my fingers get very cold, it sometimes can feel like I’ve held them under ice water for a few minutes and then quickly ran them under hot water. Additionally, and more commonly for me, sometimes I can’t feel the very tippy-tip tips of my big toes when it’s cold out. When this happens, I try to wiggle my toes and put pressure on them as much as possible to get blood flowing. Does this work? I don’t know. It usually doesn’t last long and it doesn’t affect my gait. Just my little secret!

• The MS Hug

Cute and cuddly hugs, right? Wrong. Aside from the full on attacks I’ve had, this is probably the scariest symptom I’ve experienced, and I’ve gotten this years before being formally diagnosed with MS. Due to its unpredictability and how quickly it comes and goes, I just wrote it off as one of those weird, mysterious things our bodies sometimes do with no explanation. This symptom is nicknamed the “MS Hug” because it causes the muscles between your ribs to go into spasms and can feel like a tightening or pressure wrapping around you anywhere between your neck and your waistline, sometimes making it painful to breathe. It’s about as fun as is sounds. For me, though, it’s only ever happened on my left side in a very specific spot underneath my left breast. The first few times this happened, I truly thought I was either having a heart attack or as if my left lung was punctured. It’s very painful and quite alarming, but it only lasts for a short time and now that I know what it is, I don’t worry that I’m dying. 😉

 

Maybe a couple of these things were MS-related and maybe they were not. That’s the tricky thing about this disease–because it can trigger havoc in pretty much any system in your body, it’s hard to know whether to be concerned about something new or if it’s just another day in the life. None of these symptoms were happening often enough or in tandem with any others, so I never thought to get them checked out. Is there a possibility I could have caught it and sought treatment for the disease earlier? Maybe. And maybe not. Because everyone’s experience is so different, it’s very difficult to accurately pinpoint the time of onset. I can only speculate.

Have you experienced any of these symptoms before or after your diagnosis? When you’ve looked back for any possible early “signs,” what did you find?

 

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