This might seem off topic for this space, but it is about me, and does effect my art making and while I realize my health issues are far from the worst, I’m hoping those of you who have gone through something similar can see you’re not alone and I’m also hoping to further the conversation about how medical professionals, and the world as a whole, need to take women seriously (and well, people in general).
In July of 2017 I began to get vibrations up my right leg that would radiate through my spine and right arm. Imagine placing 5 cell phones on vibrate into your right thigh, and that’s roughly the sensation I was experiencing. I was also constantly tired.
I let this go on for 4 months.
I’ve had plenty of medical issues in the past that get brushed off for years until suddenly a doctor realizes I haven’t been exaggerating or stressed. For example, my freshman year of college (2009/10) I got severe nausea and stomach pain every time I ate or drank. I went to a stomach specialist for 2 years, being put through numerous tests. At the end of the 2 years she told me I must just be stressed and stopped scheduling any further testing.
The summer before my freshman year of college I got strep throat for the first time. It obviously wasn’t pleasant. After that time I often got strep like symptoms. This came to truly effect me, when around junior year of college (2011/12) I got strep about once a month.
The summer after college I got a job at a summer camp. I had to have a physical before hand and the nurse made an off hand comment that I had the biggest tonsils he’d ever seen. When I got back from camp I went to see an ear, nose and throat specialist. He didn’t want to remove my tonsils until he had proof that they were truly a problem. I had to go back 4 more times, each when I had strep to prove that this was an issue.
It was in the tonsillectomy that he discovered my tonsils were severely infected. So goes my ongoing strep. Also, every time I ate or drank I was swallowing pus (sorry for the visual) and hence all my stomach issues were solved.
So now back to 2017. I finally went to the doctor for my body vibrations. She sent me for an x-ray to test for arthritis, the neurologist to test for carpel tunnel (he had me come back for a follow up to see how far advanced my carpel tunnel was, after apparently noting on my chart that I definitely didn’t have carpel tunnel…), she encouraged me to go see a therapist, and then sent me for blood work.
December 2017 my B-12 results were 221 pg/mL. Healthy range is considered 232 – 1,245 pg/mL. I began taking 1500mcg of sublingual B-12 daily. In February of 2018 my level was up to 766pg/mL and the doctor also had my iron level checked. It was low as well 10 ng/mL when it should be 15 – 150 ng/mL. I began taking 300mcg of iron every other day. I got pretty bad stomach pains so backed off to 3 times per week, then down to 2. By April by B-12 was 914pg/mL.
At this point the B-12 shots and follow up appointments stopped. I was no longer experiencing body vibrations but my fatigue had exponentially increased. I would wake up, go to work, come home, eat, go to bed and then wake up for work again the next morning. The internet told me this is what happens when recovering from vitamin deficiency. I was sleeping roughly 12 hours per night. I would try to force myself to stay awake, but was unable.
6 or so months later I felt like a human again.
January 31, 2018 my right arm from my elbow down became numb. The right side of my neck aches and itches. But if I scratch it it hurts. I have sharp joint pain in my elbow and knuckles. Often the entirety of the right side of my body is numb. I can’t gear my grip strength and have found myself having to adjust how I hold a pencil or fork. I’m having balance issues and sometimes become dizzy. My resting heart rate is about 100bpm. It’s difficult to write and type (this blog post is taking way too long to type out) and I’ve been dropping things all too often.
I went to the doctor 2 weeks after this all began to happen. She asked me about abuse, stroke symptoms, etc. and referred me again to the neurologist. I told her about the pain, about the numbness through my right side and she continually said back “well since there’s no pain,” “well since it’s just in your hand…” She assured me not to worry, it was probably all just stress. And then also ordered a full course of blood work.
My B-12 level is now way higher than it should be at 1801 pg/mL. I’ve been told to stop taking B-12 immediately, which I completely understand but also deeply worries me. I don’t want to slip into deficiency again. You might say this can be solved with more blood work in time, but as of now no one is suggesting that.
And now, I’m also vitamin D deficient with a level of 13.2 ng/mL, when healthy range is considered 30.0 – 100.0 ng/mL. So now begins once weekly vitamin D2 pills.
I asked for a referral for a Dietitian, but was instead just asked why I would want to see one. Don’t worry, I’ll find one on my own.
If I’m consistently vitamin deficient, either something larger is going on in my body, or I really need to iron out with a professional what I eat and drink. Instead I feel very little support from doctors, and am tired of having to wait until my symptoms are severe for anyone to be willing to listen.
Peers have told me to just go outside, just drink some orange juice, just take some iron. But this is bigger than one tiny little fix, and I’m so so tired of not being taken seriously.