Community Views: Advice For the Newly Diagnosed

Receiving a myasthenia gravis (MG) diagnosis can be a turning point. While you are no longer searching for answers when it comes to your symptoms, you now find yourself on a new journey into uncertainty. You might be wondering what comes next.

To find out more about how community members learned to handle their diagnosis, we reached out to followers of our Facebook page. We asked community members: “Do you have any advice for someone newly diagnosed?” More than 50 community members shared, and here is what was said.

Find a qualified doctor

Not all doctors offer the same quality of care. The No. 1 answer from community members focused on making sure you have qualified, helpful doctors on your side. For many, the journey starts with finding a doctor who knows to test for MG when symptoms like fatigue, trouble walking, facial paralysis, or difficulty breathing show up.

Once you have a diagnosis, many find it very helpful to work with a qualified neurologist who takes the time to learn the specifics of your illness and answer your questions.

“Find an excellent neurologist who specializes in myasthenia.”

“Find a doctor who listens to you.”

“Find a good neurologist.”

Listen to your body and rest

One of the biggest and most common symptoms of MG is fatigue, which makes sense with an illness that involves muscle weakness. After diagnosis, many people with MG benefit from slowing down and learning to check in with their bodies. Many people then find that they can no longer push themselves to get as much done in a day – and that is OK.

“Listen to your body. When it tells you to rest, rest. Do not beat yourself up for what you cannot do. And give yourself time, even if it is 15 minutes a day, to do something you enjoy.”

“Feel your body.”

“Rest is very important, and do not keep pushing to do what you used to.”

Educate your loved ones about MG

Many people find that their partners, families, coworkers, and friends often offer support, both physically and emotionally. When and if you are comfortable, it can be a good idea to share a bit about MG with them so they understand what your life is like now. As much as it can help to have someone pick up groceries or clean the house, it is a new kind of support once someone shows up and truly understands what you are going through.

“Get a good support system, if possible (family, friends), and educate them on what you are going through so they can get a better understanding of you.”

Coping with a diagnosis takes time

After diagnosis, there is an adjustment period. Your life is not over, but your life will look different. It may be helpful to take some time to grieve the life you had and allow yourself to be sad as you let go of the expectations you had in place for your life. It does take time to make peace with a diagnosis. Making peace with MG also means staying the course and looking after your health by resting, taking medicine if that helps, and monitoring your own health along the way.

“Do not give up!”

“Never give up. Believe in yourself. You can do much more than you think.”

“This can be a tough disease, but you can get through it! I am 18 years in. Hang in there!”

Thank you to everyone who shared their advice and experience for this story. We appreciate you being a part of this community.