I was very nearly done. For six months I’d done more blood-work than I thought possible, laid achingly still for multiple brain and spine MRIs, ignored fears of paralysis during a lumbar puncture and relived the nightmare of my pain and seizures through multiple doctor visits.
Three neurologists. Two pain management doctors. One spine specialist. It was one of the worst periods of my life.
I’m Not Making This Up
It started after a fairly routine procedure to manage a hip injury. I began experiencing leg spasms, intense pain, and severe muscle weakness. Initially, my doctor indicated I just needed potassium. After days of smoothies, jam-packed with electrolytes, he implied it was in my head. I assured him I was not making up the cold heat that traveled down my left arm. I promised him I was not voluntarily flailing my legs at night. I guaranteed him I was not couch-ridden because I didn’t feel like walking.
Finally, I saw a neurologist. More than one. Many of them ran the same tests: insane lab work with 15 vials of blood, platelet counts, vision assessments. One doctor recommended a sleep study in case insomnia was somehow the cause. I knew it wasn’t. With each visit, I fell into a deeper depression as I explained repeatedly what was happening and received fewer answers.
I didn’t love the neurologist that finally diagnosed me. But at least she believed me.
It’s Probably Multiple Sclerosis
She handed me a tissue, told me not to cry, and recommended I start a medicine to reduce flare-ups. Flare-ups from an illness that I “probably” had. This medicine, an intra-muscular shot self-administered weekly, left me feeling as if I had a severe strain of flu. My mother-in-law bought me special flannel pajamas to wear for the chills. My husband brought food home to me each day. I cried a lot. We put off having children while we attended seminars, educated ourselves on my new disease, and processed emotionally. Each time I felt unwell I wondered “is this MS … or do I have something else?”
A Gradual Recovery
Over time, I recovered enough to live a new normal and appreciate my luck. After all, I wasn’t in a wheelchair. I hadn’t lost my sight. I was alive. The more I read about auto-immune diseases, the more I realized how little was known. I accepted that I may never have answers and learned to live with it. Eventually, we began to plan our new future and our new family.
When Probably Becomes Definitely
After the birth of my daughter, I relapsed. I became fed up with my neurologist’s solution: more medication, designed only to treat symptoms. I didn’t want to just tolerate something no one understood. I found another doctor. I gave more explanations. More tests. More blood.
Then, finally, a diagnosis. A real one. Relapsing-Remitting Multiple Sclerosis. My third (and final) neurologist showed me images of the lesions on my brain and spine, proof this was not my imagination. We discussed, together, ways to manage and control my symptoms. When I told him the side effects of the prescribed medication were worse than the symptoms themselves, he supported my decision to wean off. We adjusted my treatment. We found alternatives that did not leave me depressed, sick, and weak.
I Have MS … It Does Not Have Me
My diagnosis was a relief, even if my disease is not curable. Knowing the root of what was happening gave me the freedom to accept it. Now, when I feel unwell, I can reasonably discern whether or not it’s related to MS. I can make choices that keep me healthy as long as possible. I still have symptoms. I still take medication. But I do so as part of a plan. I have a strategy to fight this war. It’s my disease. It’s mine because I own it. As I age, it might try to own me, but I know I’ll be prepared. Giving it a name is enough to keep me on the right path.
Find Your Diagnosis. Find Your Treatment. Find Your Freedom.
Here is what my experience taught me. Trust your instincts. If you believe something is wrong, find someone qualified to help you. Be a partner in your treatment. Be able to trust your doctor’s advice. Discuss side effects, discuss alternatives, find out how it will affect your lifestyle. Your doctors, your family, and your friends are all a vital part of managing your disease, so make sure you can rely upon and trust them. You must be willing to show vulnerability and weakness. And, at the end of the day, you must be willing to show strength. You may have a disease. That doesn’t mean it has you.