What I Did:
A Comprehensive Approach to Brain Healing
Preparing for Appointments
With most rare disease it is essential to become your own advocate or have someone (friend, family member, partner) help you advocate for yourself. Well in advance of doctor’s appointments, I start making a list of questions that I want to ask so that I don’t get flustered and forget during the appointment. Taking someone to appointments as a “second set of ears” to help remember what is said and to help ask questions can be valuable. I even sometimes take recently published, peer reviewed scientific papers with me to appointments to share with the doctor. With large caseloads and busy schedules, they may not have seen the latest reports and they may be open to discussion.
Testing De-Mystified
Make an Appointment Checklist
· Keep notes of your symptoms (using a symptom tracking app can help)
· Make a list of questions in advance
· Don’t be afraid to ask questions
· Take notes or ask if you can record the discussion
· Take a support person with you to help ask questions/listen/advocate
Try not to be discouraged if a health provider dismisses your reported symptoms – continue to ask questions, advocate and seek other opinions as needed
Alphabet Soup of Acronyms
EKG = ECG (electrocardiogram or echocardiogram) looks at heart function
EEG (electroencephalogram) measures electrical activity in the brain—useful for diagnosing seizure activity
CT (computed tomography) is quicker but provides less detail than an MRI
MRI (magnetic resonance imaging test) may be ordered with or without contrast dye to provide even more detailed structural information
PET (positron emission tomography) scan gives more functional information compared to a CT or MRI (i.e., issues with oxygen, glucose, blood flow)
LP (lumbar puncture) aka spinal tap
CSF (cerebrospinal fluid) is collected during a spinal tap and sent for antibody testing
Team Players to Consider Including
The following providers can each play a role in the management of AE and look at your health concerns from slightly different perspectives:
General practitioner
Neurologist: epileptologist, neuroimmunologist, rheumatologist
Endocrinologist
Holistic health provider
Psychiatrist
Psychologist: counselor, neuropsychologist
Rehabilitation specialists
It’s also important to reach out to organizations such as Encephalitis International and the AE Alliance, seek accurate information and support from established groups, and become a strong advocate.