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Why It's Important for Doctors to Hear My Story

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Please take the time to read this. It is not my first time writing on this topic, and it may not be my last. I want the world to hear me loud and clear, and for my story to find its way to every doctors’ office possible. Share it, like it, spread the word, so that every doctor – who may see a patient like myself – can help them now. Not in a year. Not in five years. And certainly not in 13 years.

I am 34 years old and a mother to two little boys. When I was 21, my world was turned upside down by debilitating symptoms that began overnight. I went from a healthy, young woman, about to begin graduate school, to using a handicapped placard as I hung onto my dream of earning my masters degree. There was something seriously wrong with my body, but despite seeing multiple doctors in every known specialty, no one was figuring out the cause of my debilitation.

I pushed on through graduate school as I continued to make appointments with new doctors, visited the Mayo Clinic, tried physical therapy, and cried myself to sleep many nights. It was discovered that I had Hashimoto’s disease, an autoimmune thyroid disorder, but after leveling out my thyroid with medication, it became clear that there was more going on. It was not in my head. In fact, having a good head on my shoulders is the only thing that kept me going when I felt all hope was gone.

Thirteen years went by. One hundred and fifty-six months; 4,628 days of living in the dark. I never gave up hope of finding an answer. The degree to which I became disabled was more than a pain syndrome. I was physically too weak to stand. My hands would tremor. My legs would shake from attempting to support my slim frame. My muscles twitched from head to toe. My body would convulse during myoclonic episodes at night time. But it wasn’t until I saw my current neurologist that a doctor finally recommended a lumbar puncture. And there it was on the report; five oligoclonal bands and an elevated white blood cell count. This was the data I had been waiting for for over a decade. I had been living with multiple sclerosis (MS) for 13 years without treatment.

You may wonder why I didn’t push for a lumbar puncture earlier. My case is unusual when compared to other MS cases. My MRI doesn’t show as many lesions as other patients, and the lesions that are apparent are not typical in location and appearance. They were written off as nothing over and over again. There was never a need for a lumbar puncture. My problem was not neurological. Or at least that is what I was told. By many doctors. Over many years.

I realize that my case was not easy to solve. I am not pointing fingers or blame towards any one doctor in particular. But having lived what I can only describe as a long, torturous search, I wish someone would have dug much deeper many years ago. I often wonder what I would be like today, had I been diagnosed and treated right away. Maybe I would be normally functioning. Maybe I would be taking my children to museums, to parks, and on hikes. Maybe showering, preparing meals, and taking care of my children wouldn’t be such an everyday struggle. Maybe my life would look completely different than it does.

Please share my story. I know I can’t be the only one. There are other young women out there who are struggling from very real, debilitating, progressive diseases who can be diagnosed and treated if only someone will take the time to listen and think. Our cases are not easy. They take time and much thought. But this is our life that we are placing in your hands. We are your wives. We are your daughters. We are your children. You can make the decision to save us before it may be too late. When someone like me enters your office, do all you can to continue their search today. Not in a year. Not in a decade. Now.

Getty Image by Wavebreakmedia

Originally published: March 28, 2018
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