Preparation for doctor appointment – Myasthenia Gravis Insights

…dedicated to raising awareness of Myasthenia Gravis.

Myasthenia Gravis (MG) is a rare, chronic, autoimmune neuromuscular disorder. Approximately 700,000 cases have been reported worldwide, with between 70,000 to 90,000 in North America. There are many with muscle weakness who are not included in reports because they remain undiagnosed, still in that long stretch of evaluation. This information is to help all of them.

Symptoms need to be assessed and confirmed by a qualified professional physician, a specialist, usually a neurologist, familiar with the disease.

Although you may have been searching for ‘why you have weak muscles‘ for a long time…for some of us it has taken years to get a diagnosis, while some have been luckier…when you find the right doctor, it still takes time for consultations, for testing, for evaluations.

The more helpful we can be for those who want to help us, the more likely we will get results.

‘Listen when Myasthenia Gravis speaks.‘

Prepare for your doctor appointment with meaningful data to be able to be your own advocate as much as possible

Keep a journal

With clarity and precision, take notes in your journal. Use minimum of 8-10 columns:

All comments have a part to play in accurate diagnosis. Be as detailed as possible.
List your symptoms each day, or when they occur.
Note when these **behaviors happen— when you are reading, eating, drinking, driving, working, talking, exercising, sleeping, doing daily chores or tasks, (vacuuming, preparing meals, etc) getting around, or during personal grooming, or situation you can define.
Indicate where this happened
Notice what else is going on…Note activity limitations created by the symptoms…(physical>weak legs=can’t run anymore, etc. or psychological>weak legs=can’t run=depression, emotional burdens etc.)
Note also environments, situations, weather and temperatures, as well as the physical behaviors,
Note how you cope with each behavior
Keep track of how symptoms change over time
How long did the behavior last…minutes, hours days
Add related/meaningful photographs, videos or audio segments.

** Make note if the symptoms seem to be related to behaviors or unrelated to activity, circumstances or outside influences. You don’t know what your symptoms represent until a doctor evaluates during the search for a diagnosis.

2. Use these muscle areas to relate to possible behaviors. Include related information in your journal.

How do the muscles associated with eyes react? Droop? Blur?
Do you notice facial appearance affected by weak muscles?
Do you have difficulty breathing of chewing?
Do you experience choking?
Do you have trouble swallowing?
Do you have difficulty supporting your neck?
Do you have trouble breathing at rest or during physical activity?
Do you notice weakness in your arms or legs?
Do you get tired or feel fatigued easily…sometimes, frequently?
Do you have trouble lifting objects?
Do you have trouble running, walking or standing?

3. Annotate – Verbal illustrations help

In addition, if you can, annotate events, tell the story of how your muscles were affected, how your life was impacted. Demonstrate through specific words, not just data, what happened.
“I had to hold on to the railing to pull myself up the stairs. My legs would not lift me otherwise.”
“I could not walk that far, so I rested, leaning on the wall. I could not take another step.”
“I could not run. My legs would not move. When I tried to run, they collapsed under me and I dropped to the ground.”
“I could not go down the stairs because there was nothing to hold on to. I was afraid I would fall.”
” I needed help stepping up onto the curb. My foot seemed heavy and my leg would not lift it up.”
“I couldn’t read the sign because of the blurry, double-vision of the words. I closed one eye and it helped a bit.”
“I tried to say the words, but they slurred as if I had been drinking. I could not seem to correct the slurring.”
“I tried to carry the plate, but I could not lift it very far off the table. I had to put it down so it would not drop from my hands.”

As you fill in the notations, leave room after each item to add notes later if you wish. The more information you collect, the better the chances for diagnosis.

5. Before diagnosis, make a ‘Q4Dr’ list

IMPORTANT – Invite input from caregivers or family or friends to give perspectives those of us with MG might overlook.

From your symptom list, write down questions on your ‘questions for doctor’ list (Q4Dr) that feel unanswered.
Read through FAQs on websites that you feel drawn to. (example: Conquer MG) There are many more sites with questions; if you think they apply and you need an answer, write the question on your ‘Q4Dr’ list.

Once you have found:

a doctor who listens,
a doctor you feel understands you,
a doctor who respects what you say and believes you,
a doctor with whom you feel comfortable moving forward,

then I suggest proceeding as a team to resolve your diagnosis.

6. Once diagnosed, continue to gather information

The more helpful we can be for those who want to help us, the more likely we will get results. Doctors may ask us not to go online for information. But we know searching for information helps us BE OUR OWN ADVOCATE…most times, no one can do it better!

My experiences tell me NOT everything I read about MG applies to me. In fact, most articles do not, and many are beyond my understanding.

But as my own advocate, I promote:

DO read MG websites
DO subscribe to MG newsletters
DO read comments in, and if you wish, participate in, social media, zoom, or in-person support groups
DO gather information and ask questions
DO connect personally with the organization nearest you so you can talk, email or communicate with others in similar situations.

Some of the folks on the MG sites are medical personnel with qualified backgrounds and knowledge to write extensively. Check that out.

Remember, those who write stories, make social media comments, or provide awareness sites, may not be medically qualified, but are the ones who have experiences to relate -any of them might bring up questions in your mind…write your questions down. Your doctor will be the one to resolve those questions with you.
Remember, YOUR EXPERIENCE IS THE ONE THAT COUNTS. It is your body, you can best ‘feel’ what is right for you. If the doctor and you do not click on issues, find another doctor.

It may end up that the information you discover is more
for your understanding …share it or not, have it ready.

Prepare the information. By doing so, you are learning and keeping the information top of mind. At the appointment, let it be known that you have the information. It may not be needed. But notating what you have been through and the associated details will allow you to have a more meaningful conversation.

Listen…respond… Listen…respond.
We learn more by listening…but doctors do need to know our symptoms. Ask when you should present your information. Ask questions when you need clarification. Be aware that one visit may not be enough to find an answer…but it is a beginning. Work together with your doctor to find what symptoms mean, what disorders might be suggested.

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