Can your eyes show health problems related to LEMS?

My daughter Grace was in fifth grade when I got a call from the school nurse. She asked me to come to the school to get Grace because she was complaining of a headache. Once at home, Grace explained that, along with the headache, she was seeing sparkles. I assumed it was a migraine, although she’d never had one before.

Then, a few weeks later, Grace complained that she was seeing two of everything. This incident lasted about a half hour. But within the hour, she was back outside playing with her friends. Years passed, and we forgot about these two random incidents.

However, shortly before we noticed Grace exhibiting common symptoms of Lambert-Eaton myasthenic syndrome (LEMS) when she was 14, she began seeing sparkles again, and she also complained of double vision.

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We mostly forgot about these incidents when Grace’s health deteriorated rapidly with the onset of LEMS. Within months of the first appearance of muscle weakness, Grace was in a wheelchair, so her eye health took a back seat to the pressing needs of the rest of her body.

After Grace was diagnosed, we started hearing about ocular issues related to LEMS. We learned that, although it was a less prevalent symptom, ocular health may also be affected by LEMS.

Is it LEMS?

Throughout our LEMS journey, I’ve had a hard time deciphering what ailments are related to this disease. For instance, is Grace’s lack of sleep related to LEMS or is she just a poor sleeper? Are her gastrointestinal issues related to the medication she takes to treat LEMS?

So the pressing question became whether Grace’s eye issues were a direct result of having LEMS. But even the ophthalmologist can’t answer this question for me. Most ophthalmologists have never treated a patient with LEMS, and some have never even heard of it. With rare diseases, I have come to realize that sometimes there simply are no answers. Doctors simply don’t know.

For the sake of others

Therefore, I’ve learned how to have gentle conversations with Grace’s ophthalmologist to educate her about the possible correlation between LEMS and eye issues.

We must remember that every time we educate someone in the medical field about LEMS, we are potentially helping someone else get diagnosed down the road.

Whether or not Grace’s eye health is related to LEMS really isn’t important. No doctor has confirmed it, and we don’t know for certain. But there are things I do know. For example, I know that since treating Grace’s LEMS and getting her symptoms under control, her eye problems have disappeared. She never sees double now, and the problem with seeing sparkles has dissipated.

My hope is that the doctor will remember Grace’s story and perhaps make that connection in the future when seeing other patients that may have this ultrarare disease. That way, we can help someone in need.

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.