‘LEMme Tell Ya’ About Me and My Extremely Rare Disease

“Dawn, what you have is extremely rare. It’s so rare that most doctors won’t see another patient with it during their entire careers.” These were the last words I expected to hear from my neurologist, Dr. Roople Unia, when she called to give me the results from my voltage-gated calcium channel (VGCC) antibody test.

These results finally came following years of progressive neurological symptoms that had perplexed multiple neurologists and specialists. I have Lambert-Eaton myasthenic syndrome, or LEMS. For my fellow LEMS patients who are curious, as most of us are, my antibodies are N-type with levels at 0.31, and I have the non-tumor form. I had a full-body CT scan upon my diagnosis, but my neurologist was confident and correct that my LEMS was associated with my multiple autoimmune syndrome.

Dr. Unia’s statement about the extreme rarity of my newly diagnosed disease pointed my life in a direction for which I had unknowingly been preparing. When we first sat down after my diagnosis, Dr. Unia said, “You are my first LEMS patient. We are going to learn about this together.” The combination of my background in life sciences, public health education, and pharmaceuticals gave me a leg up that most patients don’t have when diagnosed with a disease that they have never heard of — let alone one about which most of the medical community knows little. I became an active teammate with my neurologist to learn about my disease, research treatment options, and make decisions on which ones to pursue.

After my diagnosis of LEMS, I realized how obscure the disease was. I encountered blank stares from medical professionals when I said, “I have LEMS” or, “I have Lambert-Eaton myasthenic syndrome.” A doctor in the emergency room told me that he hadn’t heard of “Lambert-Eaton,” but that he’d heard of “Eaton-Lambert.” I found it lonely to be unable to have a conversation with anyone other than my neurologist about LEMS. Having an invisible illness with symptoms that come and go daily, and sometimes hourly, without a soul around you who “gets it” can be an unnerving experience. That is why I began writing.

My desire to educate others about LEMS and my other invisible illnesses led to the launch of my blog, “The Battle Within,” in my hometown’s newspaper. I also became a contributor for The Mighty. These opportunities allowed me to connect with LEMS patients from all over the country. I have spent time with many of them, and some have become my closest friends. A divine connection happens when we meet others who understand the four-hour medication window, the weak voice, and the severe weakness from overdoing it. Then, when we recover and can continue a few hours later, we don’t face judgment because LEMS patients understand and support each other as no one else does.

This column will focus primarily on my life with LEMS. I’ll share my backstories for those seeking a diagnosis. I take a cocktail of medications to manage my LEMS, and I will explain how adding various therapies to my regimen made a significant difference to me. However, I won’t recommend one medication over another. I will describe how each one of my experiences has been pivotal to my disease management. I joke and say that I’m like a high-voltage appliance as I need a three-pronged approach to treatment. I’ll also share stories of when I pushed myself too hard and fell flat on my face — literally.

I want this column to be one of hope. My friends are amazed when they see me, and I tell them, “I’m doing great!” Once I received a diagnosis, I could start treatment. I realize that not everyone with a neuromuscular disease has all of the options available to LEMS patients. While I have bad days, I know that with adjustments to meds, rest, and activity, better days are coming. I’ll keep smiling and be ready to live to the fullest on my next good day.

***

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.