This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
"You’re probably just stressed," my primary care physician told me. I was 22 years old, and I'd made an appointment to see her because I was experiencing numbness and tingling in my face. When I first noticed the tingling, I thought I could have been bitten by an insect. But after my symptoms hadn't gone away in a week, I decided to get it checked out.
Why did my doctor so readily pin my symptoms to stress? Well, I had two young boys, one of whom hadn’t wasn't even a year old yet, and I was also attending school to get my associate’s degree in criminal justice. Doctors, I’ve learned, like to assume that all new moms are overwhelmingly stressed, especially if they’re also working or studying.
My doctor simply prescribed medication for anxiety and depression and sent me on my way. She said it would help with the stress.
After the appointment, I thought, Who doesn’t get stressed? Why would stress make me go numb? I didn’t understand why that was my diagnosis—and my confusion grew when the medication didn’t work. But after about a month, my doctor just upped the dosage and told me to see a counselor, which I did.
At that point, I had a gut feeling that it was more than just stress. I thought the doctor was missing something, and I was worried that it would be too late by the time she figured it out. But at the same time, the tingling had plateaued. It wasn’t getting any better or any worse, so in a way, it became my new normal.
More symptoms, more tests
That all changed during a visit to my mom, who was a nurse. The numbness had spread from my face to my arms and legs. It felt like all of my limbs were constantly falling asleep. I didn’t trust myself to carry my boys because what if my arm gave out? I didn’t trust myself to walk long distances because what if my legs gave out? When my mom saw my concern, she took me to the ER.
Doctors there did a stroke test, which meant checking my speech and movement. (I passed it, just as I'd already passed the same tests three times during previous hospital visits.) They also gave me a CT scan of my head, which showed nothing out of the ordinary. I actually had an MRI scheduled for a few days later with my primary care physician, but when the hospital sent her my very normal CT scan results, she decided to cancel it.
For the next year, I kept going back to my doctor with the same symptoms. Eventually, she said, "OK, maybe it’s Bell’s palsy." (Bell’s palsy, or facial palsy, is a sudden, temporary weakness in the muscles on one side of the face. Doctors aren’t sure what causes it.)
I didn’t understand why it would have taken her so long to figure out that I had Bell’s palsy. Plus, people with Bell’s palsy usually have noticeable drooping on one side of the face. I may have had a tiny bit of drooping if you looked very, very closely, but it wasn’t really noticeable.
So I didn’t buy it, and I let her know. I was angry. Furious, even. I demanded to be referred to a specialist.
She (finally) sent me to a neurologist, who had me undergo an MRI. The MRI was on a Saturday, and on Sunday morning, I woke up with the worst symptoms I had ever had. I was seeing double, I couldn’t walk straight, and I was slurring my words. I felt like I was drunk.
I called the neurologist’s office as soon as they opened on Monday morning, but no one answered. I was getting desperate. My husband packed our two kids into the car and drove me to the neurology clinic. He stayed in the car with the kids, and I wobbled into the office. Through broken sentences, I told the staff I needed to speak to the doctor right away.
That was when I got my true diagnosis. The MRI results had come in, showing that I had the neurological disorder multiple sclerosis, or MS.
I was terrified. I knew my life was about to change, but I had no idea how. I didn’t know what to expect. But at the same time, I was relieved. I finally had an answer.
Diagnosed with a lifelong disorder
It turned out my drunk symptoms were actually an MS relapse, or flare-up. MS is a disease of the central nervous system in which the immune system attacks the protective sheath, or myelin, that covers nerve fibers. This causes communication problems between the brain and the rest of the body. MS flare-ups happen when inflammation in the nervous system causes new damage to the myelin.
Doctors treated me with IV steroids, which helped bring down the inflammation that caused the symptoms. Thankfully, my mom came to stay with us after my diagnosis and helped me recover from the flare-up, which lasted about a month. During that time, my mom and the rest of my family had to take shifts driving me to the hospital to get my steroids, helping me with the kids, and basically everything else.
My life was on hold. Just before my diagnosis, I had a job interview for a position as a correctional officer. The next step was a written test, but then the flare-up happened. I could barely see, let alone craft thoughtful responses to questions. I had to cancel it.
Even when I was technically well enough for my mom to leave, I was afraid to let her go. I was scared to be left alone with my kids. What if something happened, another flare-up, and I couldn’t take care of them? What if I couldn’t call for help?
MS affects everyone differently, and each person’s symptoms can change or fluctuate over time. For some people, MS may take their ability to walk, while others may experience long periods of remission without any new symptoms.
In the months after my diagnosis, I had to learn what MS meant for me, which wasn’t easy. Not having a clear course of action made me depressed. I thought my life was over, and I pushed everyone away. But then I had a reality check. I loved my kids, I loved my family, and I had to keep trying for them. I couldn’t give up.
I was diagnosed in August 2010, and though my doctor had me taking 15 to 20 prescriptions simultaneously, I had another relapse three months later. This relapse was worse than the first. I was paralyzed on the entire right side of my body, leaving me unable to do much of anything. I went through about three months of treatment, including taking steroids and doing both physical and speech therapy, before my body was back to normal.
What other women need to know
That was fortunately my last relapse, and since late 2017, many of my symptoms have actually been subsiding. With time, I’ve been able to get a better understanding of how MS affects me. I’ve learned what triggers my flare-ups, how to prevent them, and what to do if I feel one coming on. But getting to that place took a lot of experimentation, and I learned the hard way that what works for someone else with MS won’t necessarily work for me.
I tell other women who are dealing with mysterious symptoms and feeling dismissed by doctors to arm themselves with knowledge. Do your research and ask your doctor informed questions. Get a second opinion, and if you’re still not satisfied, get a third. When I was first diagnosed, my doctor handed me a pamphlet—one wimpy pamphlet that was supposed to help me understand a condition that would affect me for the rest of my life.
It wasn’t until I took matters into my own hands—did research, found a doctor I trusted, spoke to other people with MS, and joined initiatives like the MS MindShift—that I began to understand my MS. Being my own best advocate has showed me that my MS doesn’t control of my life, I do.
If you have a story to share about being misdiagnosed, email us at [email protected] and join our Misdiagnosed Facebook community to talk to women who share the same struggle.
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