How Many of My Daughter’s Health Issues Are LEMS-related?

Turning the page on the calendar is a reminder that the new school year is quickly approaching. Like most parents, I race to squeeze in all the dentist and doctor appointments I’ve put off in lieu of summer fun.

Since our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14, that list of doctors has grown exponentially. In the past two weeks, Grace, now 17, has had a nine-hour Rituxan (rituximab) infusion, a dentist appointment, a dermatology appointment, an eye exam, and a primary care appointment.

Each appointment poses a significant question that neither her doctors nor I know how to answer. In regard to Grace’s health, are the issues she experiences a result of LEMS, a side effect of her medication, or something completely unrelated?

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For example, Grace has had beautiful, long, thick hair for most of her life. Recently, we noticed significant hair loss and thinning. I researched side effects of Rituxan and reviewed common LEMS symptoms. Nothing touched on hair loss.

Is something else going on in Grace’s body, or is hair loss just another side effect of LEMS? I believe it may be a rare side effect of Rituxan, based on my observations of when she began losing hair.

One issue we’ve never been able to attribute to LEMS is Grace’s eye problems. Looking back on the timeline of her symptoms, I realized one of the first things she complained about, even before muscle weakness, was seeing sparkles in her left eye. It was always her left eye, and never accompanied by pain or migraine. It would usually dissipate in about 20 minutes.

These episodes have become less frequent over the past year, but they still occur occasionally. When we inquired with Grace’s most recent eye doctor, she assumed they were silent migraines, or migraines without pain. Although LEMS does affect the eyes in 42% of patients six months after disease onset, they’re mostly affected by diplopia (double vision) or ptosis (droopy eyelid), neither of which Grace has experienced.

So we keep watch. We inform ourselves as best we can through LEMS Facebook pages, forums, and relationships within the LEMS community. We gather what information we can and bring this to our doctors to help them make informed decisions about Grace’s health.

LEMS overshadows every part of Grace’s health, so it’s always in the back of our minds when a new issue arises.

How do you decipher whether or not something is related to LEMS? Please share in the comments.

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 other 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. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.