A Multiple Sclerosis diagnosis can be overwhelming, confusing and can raise numerous questions and concerns. Now what? Stress, anxiety and fear can be paralyzing, hindering the ability to make rational/logical decisions. After all, nobody prepared you for this. Here are some suggestions to help you be in the driver’s seat from the very beginning:
- The first step is to regain control. Make a conscious decision to manage the disease rather than to be managed by it. Gather information, ask questions, and learn as much as you can. Once you feel more in control, you can make more informed decisions and avoid making beginner mistakes.
- You might want to consider taking a relative or a close friend with you to the meetings with your medical team. They can remind you what to ask, take notes, and request clarifications and explanations.
- When choosing a doctor, you might want to ask for recommendations. It is essential to be comfortable with your doctor. Make sure you have the clinic/doctor/nurse contact info (emails and/or phone number) in case you need to contact them directly. Remember that ”The good physician treats the disease, the great physician treats the patient with the disease” (Sir William Osler).
- You might want to seek a second opinion from another doctor, especially to confirm a diagnosis and evaluate treatment options. Asking for a second opinion is a common practice.
- MS is a lifelong condition. Therefore, it is imperative to document all the medical records. You should organize your own folder/binder or digital file in Belong (Files). It can be shared with family members and should contain all the documents, test results, lab reports, and any other pertinent information.
- Plan each appointment with the medical team beforehand, and prepare a list of questions and topics for discussion. Some questions to consider may include the type of MS, what other tests are needed, treatment options (if any), short and long-term side effects and more. Make sure you write down the answers and file it with the after-visit summary (AVS).
- After each meeting with the medical team, summarize the appointment’s details in your own words and add it to your folder for a follow-up.