Become Your Own Myasthenia Gravis Advocate
Last updated: June 2023
As you probably know, myasthenia gravis (MG) is a chronic autoimmune disease. Because of the rarity of this disease, many physicians and other medical professionals know or understand little about it.
In the grand scheme of things, because it is a rare disease, it’s often unknown and misunderstood by many.
Start a discussion
I’ve been reading that a lot of our community members are having trouble getting physicians to really listen and believe what they are telling them. I understand just how frustrating and frightening that can be.
Therefore, I’d like to talk about some of the things you can do that may help people, especially physicians, to listen to and believe in what we have to say.
A good way to start getting people to listen to us is to initiate a discussion with others that have been through this. If you have any helpful hints, you can add to mine!
My experiences with getting a diagnosis, though frustrating, seems to be minor compared to many of you. However, that doesn’t mean I haven’t experienced those issues in some form, too.
In my experience, it seems like too many have just "blow off" some of the symptoms that I’ve called to their attention.
I knew they were symptoms of myasthenia gravis. But since I’d never experienced it before, their dismissal of my questions made me doubt myself for about 2 minutes. Then I decided I knew better!
Document your symptoms
So, what do we do to get the medical world to listen to us? In helping my husband through an unrelated illness over the last 2 and a half years, I’ve learned a few things that got their attention. Here are some things I did to advocate for him that I think will work for those of us with MG, too.
Documentation of your symptoms and outcome is important. Document each and every symptom no matter how trivial it seems to be. Write them out in detail and be sure to include the date and time.
If you have a visual symptom that flares up, like swelling, but then it goes away, take photographs and attach them to your notes.
Write how the issue was resolved, or if it wasn’t resolved. Be sure to keep a copy on file and take oen with you when you go for each of your doctor appointments.
Do your research
Research all your symptoms as a group of symptoms. One symptom alone will generally not give you answers, but all of them may.
Even with that, sometimes, you will get more than one potential diagnosis. However, please never try to self-diagnose!
Update your records
These guidelines are meant to get you help, not to take the place of a qualified physician. That said, see your medical professional fully armed with your documentation, your research, and if possible, your advocate! If all else fails, ask to be tested.
Until you can get in to see a qualified physician and get proper treatment, stay aware of the changes you experience and add it to your documentation.
Ask loved ones for support
Try to get support from a friend or family member. If they are informed of your symptoms and the research, they are more likely to believe in you.
They can be your advocate when you see your physician. In the meantime, if you get worse or start having more serious breathing problems, go immediately to an emergency room. A prompt diagnosis is of the utmost importance for your welfare.
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