Health - A story in confusion [part 2]

Real Life Mystery Diagnosis

Through the fall of 2016, symptoms and medications were pilling up. I eventually needed to create a medical binder to help me organize my thoughts and problems. I developed severe nerve pain, usually in just one side of my body, which was sometimes bad enough to keep me bed-bound. I couldn’t hug my loved ones, couldn’t get out of bed, and sometimes couldn’t even move when I had flares.

As my condition got worse, it seemed as if doctors were taking me less and less seriously. I don’t know if I was downplaying my symptoms or not explaining things correctly, but the response I was often met with was dismissal. I still remember crying at an appointment, begging for help in some way, because I couldn’t put weight on my left leg because of pain. My doctor just said to “wait for it to go away.”

But things kept getting worse.

Eventually my central nervous system was not the only thing affected. My nausea and vomiting returned, and I started losing weight. I started having mystery allergic reactions – itchy rashes and hives, horrible red splotches – to showers, emotions, sunlight, temperature changes, my own tattoos, and some foods. Sleep became a dominant part of my life – twelve hours was my new minimum. I became confused, disoriented.

Flushed, burning, and itching hands due to an allergic reaction while watching Netflix.

I was eventually hospitalized for my confusion or officially “altered mental status.” A number of tests were run, CT scans, MRIs, and all the doctors came back with was I was psychologically doing this myself, maybe as a reaction to a nonexistent trauma. However, there was intern who believed me. He looked through my medical binder, visited me every day, and was so sorry the head of neurology didn’t take my case seriously. His belief kept me going through the stay – it is amazing what one person can do.

New Status quo

This was my status quo for months. I was on an eight-month waiting list for a few specialists. No one really knew what to do, and I was out of options. We had addressed all the usual suspects – everything came back normal. (the only abnormality was low iron, which we address with an iron infusion – no change). Things were getting to a point where I could only eat baby food and soups, I was running into everything, and I was passing out when sitting up. I knew I had to do something.

New Doctors

Through the recommendation of another chronically ill friend, I found a new primary care doctor, who was actually interested in my case. There is a phrase for doctors – when you hear hoofbeats, think horses not zebras. He thought zebras, which I desperately needed. I also got referred to a rheumatologist. I think of this as the pivotal moment of my care. I started advocating in a way I never had because if I didn’t get my voice heard, I would likely be in a wheelchair or even be housebound.