These Tips Help Me Prepare for Our Next Doctor’s Appointment

For the first year after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS), our schedule was filled with doctors’ appointments.

Referrals to neurologists, rheumatologists, dietitians, and physical therapists abounded. Add in monthly IVIG treatments, and it felt like we lived at the hospital.

Don’t get me wrong, I was grateful for every doctor we were able to see. But it seemed like a week couldn’t go by without us making the trip downtown to the children’s hospital. 

Thankfully, Grace’s health stabilized, and we began to see the specialists less often. Grace’s neurologist changed her appointment frequency from every three months to every six months. His team has always been quick to respond to my emails, but I felt a disconnect with so much time between appointments.

Then, I realized I had to make every appointment count. I needed to be well prepared for the time we would have with Grace’s doctor.

Following are a few things I found helpful while preparing for the next doctor’s appointment. 

Gather information in one designated place

The first thing I realized was that over the course of six months, several questions come up. I am notorious for writing notes and important messages on scrap paper. This habit is not beneficial for organizing my thoughts and concerns for Grace’s next appointment. I began to record questions and concerns in a spiral-bound notebook that I keep in a specific place on my desk. 

Reach out to fellow LEMS patients

Some questions I’ve had in the last six months were answered by members of the LEMS community on Facebook or the Lambert-Eaton News Forums. Of course, we don’t want to make medical decisions absent of professional medical advice. However, I found that these online communities were able to answer many of my general questions. Reach out to these groups and glean wisdom from their experiences. The information is valuable, and the friendships priceless. 

Research

Grace was her doctor’s first pediatric LEMS patient. He has educated himself on Grace’s behalf, and is not threatened when I bring him information. We work well as a team and advocate for Grace’s health.

At times, it seems we are learning together. When Grace was first diagnosed, her doctor was unaware of the medication Ruzurgi (amifampridine), which had recently been approved by the U.S. Food and Drug Administration for the treatment of pediatric LEMS patients. The first prescription he wrote was for Firdapse (amifampridine), until I passed along the information that Ruzurgi had been approved for use in patients ages 6-17.  

Grace’s doctor is very proactive in her care and genuinely wants to see Grace improve exponentially. But I cannot overlook my own abilities to learn and share information with him. 

Write out clear and concise questions

After gathering your concerns and researching available information, it is time to write out questions to present to the doctor. Be precise. Write follow-up questions, depending on the doctor’s answer. The first few times we visited specialists, I immediately forgot to ask important questions. Writing questions down helps keep me on track and get the most out of the appointment. 

Our time with the doctor is valuable. Let’s make every moment count! 

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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 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.