Living with a chronic condition like myasthenia gravis (MG) means paperwork — a lot of it. Your medical records tell the story of your journey, which for most patients usually means numerous specialists, tests, symptoms and treatments spanning the course of many years. Keeping track of all this information may sound like a hassle, but it will help you communicate with doctors, follow the evolution of your symptoms and play an active role in your care.
What to include in your medical records
Start at the beginning of your myasthenia gravis journey and document each step of the way.
Diagnosis: Summarize your doctor’s comments when you learn of your diagnosis, take note of the date and file the antibody test results (AChR, MuSK, LRP4), as well as the results from tests like a repetitive nerve stimulation test or electromyogram. Document your symptoms at diagnosis, too. All this information will be an important point of comparison over time.
Evolution of symptoms: Keep a daily symptom diary. Even if there is no change from the day before, write it down: Regular observations will help you understand the patterns of your symptoms and your response to medication. Describe details of side effects to your medication, symptom flare-ups, their intensity and duration and any easing of symptoms or remission.
Lab results or scans: File all lab tests such as antibody levels, blood counts and liver function chronologically. Keep copies of MRI or CT scans of your thymus gland.
Medication and medical procedures: Have copies of documents related to all medical procedures and hospitalizations. Keep a list of medications and all prescriptions.
Doctors’ details: Keep track of the different medical professionals involved in your care, their specialty, contact details and notes from each appointment.
Questions/thoughts: Note down any questions you want to ask your doctor during your next appointment. You may hear about a new treatment or need advice on medication or lifestyle changes; writing everything down helps make sure you get answers to all your questions even if you’re feeling rushed or tired.
Read more about MG treatment and care
Ways of keeping track of medical records in MG
Finding a filing system that suits you and keeping your health records organized and up-to-date will give you greater ownership of your disease and treatment.
Choose a system that is easy to access and manage. For some people living with MG, this may be a selection of binders organized into sections. Others may prefer digital copies filed in folders on their computer or in an app that stores and encrypts health records.
It is also a good idea to ask your healthcare provider for their advice, as they may use an online portal to store your medical records, known as a personal health record (PHR) system.
Whatever you choose, make it a habit. Keeping a complete record of your health and experience with MG will help you feel empowered as you manage the challenges of living with this chronic disease.
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