Tips for Making Every Doctor’s Visit Count When You Have LEMS

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Managing treatment for a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS) can be challenging.

Here are some tips to help make every doctor’s visit count:

What has changed since the last appointment?

Do you have any new symptoms? Have you changed any medications (even over-the-counter ones) since the last visit?

What have you noticed since your last appointment? Do you have new questions for your doctor? Have you read something about LEMS that you would like to discuss?

Make a list of your concerns before the appointment so you can get all your questions answered in a single visit. If there is new research related to your disease that you have questions about, bring a copy with you so you can discuss it during the appointment.

Keep good records

Keep all of your medical records in a single location and take a copy with you when you go to the doctor’s appointment. With your records, there should also be a list of all current medications and supplements, along with dosage information and how often you take each one of them. If you are on a special diet, make sure that information is kept with your records.

Many patients find it easier to keep their health insurance information with their medical records so that they do not have to search for it before their appointment.

Have a plan for the appointment

Make a plan for your appointment — what do you need to discuss? What are your goals for the visit? Do you need to talk about a medication change, concerns, or a new symptom?

Keep your plan with you when you go to your appointment so you can refer to it and make sure that all your concerns are addressed.

Record your appointment

Even when everything goes according to plan, doctor’s visits can move very quickly and there’s often a lot of new information. You can use an app on your phone or another device to record what the doctor says to make sure you don’t miss anything, but make sure you have your doctor’s permission before you start recording.

After the appointment, go over the recording and make notes about what was discussed.

Update your treatment plan

After each appointment, update your treatment plan. A treatment plan contains detailed information about your disease, what the treatment options are (with pros and cons as well as potential side effects), and the plan for effectively managing your care. Include information — how long will you be on a certain medication? How much will it cost? What potential side effects should you be aware of? Keep your treatment plan with your medical records and review it often.


Last updated: Aug. 28, 2019


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.