My dad was very lucky that he was diagnosed fairly quickly. For many people with MG, it can take months, or even years. Once you get a diagnosis, you need to quickly get into the mindset to advocate strongly for yourself. No one else will be able to do it as well as you.

“Everyone's disease presents a little differently. That's why MG is known as the 'snowflake disease' – no two people's symptoms are ever quite alike.”

At your first visit, you'll most likely meet with a neuromuscular neurologist. This is a type of neurologist who specializes in disorders of the nerves and muscles, like MG.

Here are some ways to prepare for your appointment.

Your first doctor's visit may go very quickly. There's a lot to cover! You'll want to learn as much as you can about MG, including treatment options and your prognosis. Here are some questions to ask your doctor, and here are some questions your doctor may ask you.

My dad was lucky enough to find an experienced, caring neuromuscular neurologist right away. But there are still times where he – and I – need to speak up. Here are some situations where you might have to do so.

If this is your first appointment after your MG diagnosis, you're probably on information overload. Here are some ways to process and organize your diagnosis, along with next steps:

Explain MG to others. Once we got my dad squared away with a diagnosis and treatment plan, we sat down to explain the condition to the rest of our family. MG can be tricky because it's often an invisible disease. When you're not in a flare, you often look fine. Others might not realize that you're tired or short of breath.

Organize information. I keep a physical folder with all of my dad's medical records, including his MG diagnosis and all the medical tests he's had. It's helpful whenever I have a question, when we meet a new medical provider, or when he applied for disability benefits.

Make follow-up appointments. After his first visit, my father had to see an ear, nose, and throat specialist since he had trouble swallowing. They wanted to make sure it was related to MG, and not another condition. He also had to see an eye doctor, to monitor his double vision, as well as a speech pathologist.

Learn how to communicate with your team. You should know how to reach your doctor's office for routine matters, and what to do in an emergency, such as when you have an MG crisis.

Adjust to your new normal. My dad worked two full-time jobs for most of his adult life. He went from that to being mostly at home and at doctor's appointments. He also couldn't drive anymore, because of his double vision. It was a lot for him to get used to.