A Conversation Guide for Your Doctor: What to Do When Your Doctor Is Not Familiar with NMO
NMO is a rare condition. Doctors are not sure of the exact number of people living with NMO. According to different sources, between 4,000 and 15,000 people in the United States are living with the condition. NMO also has many similarities with other neurological conditions, including multiple sclerosis (MS).1,2
Improvements in diagnosis and understanding of NMO have allowed doctors to separate it from other issues. This has also led to new changes in treatment planning.1
NMO: Something new for your doctor
Because of its rarity, some doctors may not be as familiar with NMO as others. You may be the only case of NMO your doctor has seen. This is especially true if your doctor is someone who does not specialize in neurological issues, such as a primary care doctor. This can make having good, productive conversations challenging.3
Ask about their experience with NMO
A great way to start the conversation is to ask about their experience. Many doctors will feel comfortable talking about their history caring for people with NMO or lack thereof. They may even tell you how they plan to learn about the condition if they have not seen it.
Example questions that can start an open discussion around their experience include:3
- Have you heard of NMO before?
- Have you ever treated someone with NMO?
- Do you feel comfortable caring for someone with NMO?
- What are some strategies you use for learning about unfamiliar conditions?
- Could I share some resources with you about NMO that I like?
Educate on your symptoms and drugs
Even if your doctor knows about NMO, it is possible they have treated very few – if any – people with it. They may not know what common NMO symptoms are or could be. This is a great chance to provide examples to your doctor about what life with NMO is like.
Explaining your full symptom history is a great place to start. How severe your symptoms are and how they impact your daily life are good topics of conversation. You can also discuss symptoms you are worried about developing. This way, both of you can keep an eye out for these together.
Depending on how long you have had NMO, you may have tried several different treatments. It is possible you are now taking many different medicines. Tell your doctor about all medicines you are taking. Certain drugs can interact with one another. This will help your doctor prescribe safe drug combinations, both for NMO and other conditions you may have. It can also help guide future treatment plans.
Discuss specialist care and responsibilities
Most people with NMO see one or more specialists. These include neurologists, ophthalmologists, physical therapists, and more. Talk with your doctor about all the other providers you see. If you are in need of a specialist, let your doctor know that, too. They can help connect you with the experts you need.
Once you have a team of doctors, ask about responsibilities
Questions that can help guide these conversations include:3
- What parts of my NMO do you feel comfortable managing?
- How will you communicate with my other specialists?
- Who should I contact if I have new symptoms?
- Who should I contact if I have drug side effects?
- Who will perform any monitoring labs or tests?
- Who will help me coordinate other services, such as financial assistance, physical therapy, occupational therapy, mental health professionals?
Establish open lines of communication and set goals
Regardless of how experienced your doctor is with NMO, it is important that both of you can communicate about any issues that arise.
You can set goals together, too. You may share with your doctor that you want to improve a drug side effect or reduce the risk of relapse. They may set a goal to learn more about a specific treatment for NMO so both of you can discuss it at your next appointment. Regardless of what goals you set, creating open lines of communication is key. You can both learn together.
Creating a safe environment to address other issues as they come up is also key. You may need more resources as you navigate life with NMO. This may include mental health support, financial support, or other services. Feeling comfortable talking with your doctor about all aspects of your health can help connect you with the resources you need.
Were you misdiagnosed, prior to being diagnosed with NMOSD?