Four months ago, I woke up and my hands were numb: a tingly sensation like they had fallen asleep. This would be no big deal if it had eventually gone away. Imagine wearing thick leather gloves in your everyday life, except those thick leather gloves also randomly stabbed you and made your joints ache. I sat on the couch for three days and watched Netflix, unable to even fold laundry. I laid in the fetal position, my hands curled underneath me. Finally, scared that I could be causing damage with my inaction, I called the family doctor and set up an appointment.
I sat in the waiting room for an hour and a half before being called back, where I proceeded to wait for another 45 minutes. There were innumerable times I was frustrated and almost walked out, but my partner reminded me I was there to get answers. When my doctor finally arrived, I spent 10 minutes talking to him before being sent to get blood work and X-rays with a prescription in hand for your basic arthritis NSAID.
In the three months that followed, I have seen two doctors, two specialists, and countless nurses. I have been tested for everything from Lupus to Lyme disease and stuck with a hundred needles. A nurse had to find a different vein for blood work because the main vein was too bruised from earlier blood work.
Even though it doesn’t sound like it, I am lucky. As a graduate student, I have access to a health center on campus where I can walk in and see my doctor multiple times a week. Specialist appointments are harder to come by, though, and were set-up months down the line. My symptoms progressed, the numbness spread. Now my numbness equates to wearing opera gloves. My feet are numb. Joint pain, muscle pain, lightheadedness, double vision, fatigue; I’m napping more, grumpier, the pain spreading like wildfire. I finally got in to see a rheumatologist, but spent more time waiting in a paper hospital gown than I did talking to my doctor. The visit seemed fruitless, just more blood work.
A month ago, I walked into my doctor’s office and made a last minute appointment. He squeezed me in and called another doctor in for a second opinion. I ran through my symptoms for the forty-millionth time: “I am in so much pain it’s distracting. Sometimes I have to remind myself to breath because I’m holding my breath, I am in so much pain.” I said these words to two doctors at the same time in the same office and still walked away with no pain intervention. “Women are more likely to seek treatment for chronic pain but are also more likely to be inadequately treated by health-care professionals who, at least initially, discount women’s verbal pain reports,” according to a groundbreaking study by Anita Tarzian and Diane Hoffman.
When I walked in two weeks ago complaining of vision problems and lightheadedness, (my second appointment in three days) my doctor called the neurologist and found a cancelled appointment time to squeeze me in.
At the neurologist, I was the youngest person in the waiting room by at least a decade, everyone else was my grandparents’ age or visibly disabled. I kept thinking that, at 25, I’m too young to be here. More poking. More prodding. More tests. But the neurologist was the first to utter a possible diagnosis: Multiple Sclerosis. He scheduled a closed MRI of my brain and neck (with and without contrast!). The MRI was on Tuesday. My results will be in today or tomorrow.
More than 50 million Americans live with an autoimmune disease, and more than 75% of them are women (according to the American Autoimmune Related Diseases Association). A survey by the Autoimmune Diseases Association found that more than 45 percent of patients with autoimmune diseases have been labeled “chronic complainers” in the early stages of their illness. Another AARDA survey found that it takes up to 4.6 years and nearly 5 doctors to diagnose most autoimmune patients. I do not have a diagnosis yet, and it might not be MS, but I’m already further down this path than most patients. The ridiculous part is: even with a potential diagnosis, I still haven’t been treated for my pain.
This is part one is a series by our Associate Editor, Roxy Lenzo, as she explores the wild, wild world of whatever the fuck she gets diagnosed with.