Taking the First Scary Step After My LEMS Diagnosis

Being diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) after living over a decade with progressive neuromuscular symptoms was a relief, at first. For so long, my symptoms came and went, and none of the specialists I saw could tell me what was causing them. However, my relief was quickly followed by concern.

“Whatever you do, don’t freak out when you start looking stuff up on the internet” was the first piece of advice my neurologist gave me on that fateful day when I finally received the name of what was causing my symptoms. I had been years on the path of thinking that my symptoms were multiple sclerosis (MS); numerous MRIs and lumbar punctures were concerning but did not lead to that diagnosis. I didn’t even ask what autoimmune disease my neurologist thought might be attacking my nerves when she finally ruled out MS.

Now I had the name: Lambert-Eaton myasthenic syndrome. Of course, I started researching online to find out about this ultra-rare disease that most doctors will never encounter.

I learned that a LEMS diagnosis could mean one of two things. Either my immune system was hypervigilant, attacking my nerves and stopping them from releasing acetylcholine, the messenger needed for muscle movement. Or, I had a cancerous tumor that was triggering the production of the antibodies that were preventing the release of acetylcholine. When the message to move doesn’t reach our muscles, we become weak. This is LEMS in a nutshell.

The first step after a LEMS diagnosis is a full-body CT scan to check for a cancerous tumor. Why does cancer need to be ruled out for LEMS patients before starting treatment? The presence or absence of a tumor will determine a major component of LEMS treatment. If there is cancer, it will need to be addressed. If there is no cancer, then immunosuppression will, in most cases, be part of the treatment to slow the disease’s progression.

Throughout the trials in my life, I’ve learned not to panic. I know that giving in to fear will waste the precious energy I need to deal with the problem.

Having already been diagnosed with five other autoimmune diseases, I knew a chance existed that my LEMS was also caused by autoimmune disease. I didn’t have the extreme weight loss associated with cancer, nor did I have a history of smoking that could indicate small cell lung cancer, the most common form of cancer in LEMS patients. It turned out that my neighbor Kim, who is a CT scan technologist, was working the day of my CT scan. When she helped me onto the scan table, she kindly said that she wished she was seeing me “under different circumstances.” It was at that moment that I realized how dire my situation could be.

Fortunately, my CT scan came back clear. Because I’ve had my LEMS symptoms for well over 10 years, my doctors concluded that my LEMS is a part of my multiple autoimmune syndrome, and I was started on immunosuppression as the first line of treatment.

Now, whenever I walk my dogs and meet Kim, I think back to the day we were together for my CT scan and realize how fortunate I am that my LEMS is managed. Some days are not easy. Meds are a constant that I plan my entire day around. However, all things considered, I am living a great life with LEMS!

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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.