AAC 2026: Newly diagnosed and prepping for a neurologist visit
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When you’re living with Friedreich’s ataxia (FA), the period following a diagnosis can be filled with uncertainty, including when you’re preparing for your first visit with a neurologist. At the 2026 Annual Ataxia Conference (AAC) in Orlando, Florida, a recent session provided guidance on navigating an appointment with a neurologist with greater confidence.
Presented by Liana Rosenthal, MD, PhD, director of the Johns Hopkins Ataxia Center in Baltimore, the session explained how to make the most of a specialist appointment.
“It is really my absolute pleasure to be here, to be able to talk with all of you about what it means to be newly diagnosed,” Rosenthal said, “and how to prepare and think about your next neurology appointment.”
Deciding on your goals
First, ask yourself what your goals are for the visit. For example, you may want to focus on addressing specific FA symptoms, such as balance or swallowing issues, or you may want advice on life planning with FA.
Rosenthal recommended selecting two to three main points to discuss with your doctor, given that there are time limits for your visits. “Sometimes we have time to get through everything on the list,” Rosenthal said. “And sometimes, the reality is that we don’t.”
Tracking your symptoms
If possible, try to track your FA symptoms before the visit to share with your doctor. This may help them with finding ways to manage them.
You may also want to pay attention to any potential changes in symptom frequency and severity, Rosenthal suggests. In addition, ask yourself how your symptoms may have affected your quality of life and functioning.
If this isn’t the first time seeing your doctor, you may want to note any symptom changes since your last visit.
Share your medical history
Rosenthal also recommends bringing and sharing your medical history with your doctor.
This includes your medication list and information about when you take it. If you take any supplements, let your doctor know that as well.
If there have been any adjustments to your medication doses, keep track of them and record any potential impact they may have had on your symptoms. An example would be more frequent or less frequent falls following a change in dosage.
Preparing questions
Asking questions is essential to making the most of your visit and advocating for yourself.
Examples of what to ask your neurologist include:
- What is my diagnosis and prognosis?
- What workup options do I have?
- Are there specific treatments that you recommend?
- Can my symptoms get better? If so, how?
You should also feel comfortable discussing with your doctor issues related to your life with the condition, such as long-term plans, as well as balancing your job with having FA.
Additional advice
Rosenthal shared some other tips that may help during and after your visit:
- Be honest about your symptoms and how they may affect your daily life. “The goal of your visit is not to prove to me that you’re doing great,” Rosenthal said. “The goal of the visit is for me to help you.”
- Have someone go with you to the appointment for support, whether it’s a friend or a spouse.
- Ask your doctor about the next steps after the appointment.
- Maintain a health folder with key information related to your diagnosis.
In addition, Rosenthal suggests that you do your best to understand your doctor’s practice. This includes finding out how often you will need to attend visits, the best ways to communicate with your doctor, and information about your access to medical records.
Finally, ask about the rules for emailing your health provider. But most important: “Never email in an emergency,” Rosenthal said. Instead, call 911 for any sudden, urgent issues.
Additionally, when you do email your doctor about a nonemergency, expect that it may take a few days for your specialist to get back to you, Rosenthal said. She also noted that some health offices charge for the time spent answering emails, so it’s important to ask your doctor’s office about its specific policy.
While an FA diagnosis can seem overwhelming, preparation and clear communication can make your first neurologist visit — and the ones after that — more manageable.
When you’re equipped with practical advice and resources, you can approach your care with assurance and a sense of empowerment.
Note: The Friedreich’s Ataxia News team is providing live coverage of the 2026 Annual Ataxia Conference April 9-11 in Orlando, Florida. Go here to see the latest stories from the conference.
