SheKnows, JULY 21, 2016 AT 8:00AM AM EDT
by MEG HARTLEY
This fall, after a lifetime of odd health experiences, I became too sick to do literally anything. Lifting up a book to read or my phone to scroll was too painful for my arms. Sound frequently and intensely irritated me, making binge-watching out of the question. Every time I stood up, blackness would cloud my vision, and I’d be sure I was going to faint. Once I was up and the darkness lifted, I couldn’t walk right. My legs were too weak, and it felt like something was tugging hard on my nervous system, pulling it upward like I was a marionette.
I thought I was dying — and I kind of was. Without a diagnosis, I would have died. I had a total of 33 miserable-making symptoms.
It came on slow. It was tiny aspects of my experience — a cyst here, a rash there. Or other random things, like being clumsy and having to pee all the time. Sometimes it was bigger things, like a mental break or endometriosis symptoms. There were also the ever-increasing changes in my demeanor and level of energy and an electric pain that started as innocuous pins and needles.
I didn’t want to admit something was wrong. So for a while, it was easy to pretend I was fine, but it turns out I’ve been ill for a very, very long time. It’s hard to say exactly how long. I can’t go back in time to give a 10-year-old me with ulcer symptoms a blood test, but that period of pain went unexplained and was consistent with what’s made me so sick now: vitamin B-12 deficiency, of all things.
My symptoms have progressed to funicular myelosis, which is the combined degeneration of the spinal cord. It’s probable that without treatment I would have been paralyzed by now. MRI scans revealed that my brain looks much older than it should, with white foci sitting where they ought not. And six months into treatment, I still can’t walk more than a few minutes without dire punishment.
And because of a vitamin. A vitamin. It’s fucking nuts.
So why wasn’t I tested before the age of 33? Why didn’t they figure it out before it got so bad? I’ll leave out big pharma’s role and pin it two big things: misdiagnoses and misconceptions. Vitamin B-12 deficiency mimics many other diseases, and it can look like almost anything, making misdiagnoses rampant.
Doctors have also been taught to consider serious B-12 deficiency an old person’s disease. When people get older, their stomach often stops working right, and they can no longer absorb B-12 through foods, eventually creating a deficiency and an array of symptoms. Although that’s when it’s caught most often, it can happen at any age.
Another misconception is that because B-12 is only found in animal products, only vegans and vegetarians need to worry about it. Nope. In addition to stomach problems, which are created by many things such as surgery or autoimmune disorders, it’s possible to become deficient even if your intake is sufficient. It can also come from a very common genetic mutation called methylenetetrahydrofolate reductase, or MTHFR for short. (Apt, isn’t it?)
That MTHFR of a reason is mine. My prognosis is good; treatment is simply B-12. I’m getting better, oh-so-verrrry slowly but surely. Most of the random symptoms have vanished, which is wonderful. The biggie now is the electric pain; I feel like I’m being electrocuted most of the time. That and if I move too much (barely at all), I lose the ability to walk.
I’ve had a lot of time to reflect. It’s a strange thing to discover that you’ve been sick most of your life and you didn’t even know it. There are so many little symptoms that I thought were personality quirks, like excessive sighing (shortness of breath), getting confused or being lazy (weakness and low energy).
I look forward to a new shot at life. In my daydreams, I regain levels of health I once knew as a competitive dancer, and life is imbued with a level of vitality I haven’t known as an adult. Everything is easier, and I feel like a super-me, able to hike up mountains and actually consider it to be fun. I travel the world and explore ancient ruins without ever saying, “I’m tired.” Ah. Let’s hope.
And as for you, I recommend that if you have any, and I mean A-N-Y, unexplained ailments (including mental illness and infertility) you get your B-12 levels tested. Early B-12 deficiency can look like almost anything, as it affects the nervous system, which is part of everything. Also, find out if you’re a MTHFR, and take the appropriate precautions. It might seem like a pain in the ass, but just do it. Trust me.