Lessons Learned: Advice I'd Share With Myself After My Myasthenia Gravis Diagnosis

Reflecting on my journey with myasthenia gravis (MG), I encountered many challenges and learned valuable lessons. I often wish I could share the knowledge I've gained with my past self when I first heard the diagnosis.

If I could offer guidance to my younger self after receiving my diagnosis, it wouldn't have eased my fear at that moment, but it could have made the path to healing smoother. While my struggles were not in vain, I wish I had transformed earlier into a state of empowerment and understanding on this journey with MG.

If I could go back in time

If I could go back, I would stop myself from frantically searching the internet for information that highlighted all the scary and daunting things. Instead, I would gain the attention of my past self and share the following information:

Hey there Jodi,

First and foremost, I understand that this moment feels particularly monumental in halting your life and that the uncertainties feel overwhelming. I'm sorry that you're experiencing such a difficult situation. You're going through something significant, but I promise you will be okay, and lots of love surrounds you.

Symptoms will fluctuate

You won't always feel as you do right now; changes will come over time. There will be days that feel easy and others where you feel completely drained. Some moments will challenge your perseverance, but you'll eventually find your new normal. Remember to be gentle with yourself during tough days. With time, you'll learn to navigate the bumps in the road and understand our body's unique signs and triggers.

Lifestyle choices

Taking care of yourself is crucial right now. While I know you enjoy tanning in the Florida sun, please remember the importance of staying hydrated and not ignoring how sun exposure and heat impact your symptoms. Also, avoid drinking alcohol while on your MG treatments. You don't want to experience the time future you passes out after just a few sips of a margarita. Focus on small choices to support your body during this time.

Learn about MG, then keep learning

In the initial months, you'll feel quite fatigued and need plenty of rest. Thankfully, Mom plays a vital role in supporting us by finding a great doctor and organizing our appointments. However, reflecting on our treatment, there are a few things I wish we could have changed.

If you experience small bursts of energy or boredom, consider exploring informational websites about myasthenia gravis (MG). Learning about MG and others' experiences is a turning point in our confidence and familiarity with the disease. The more you educate yourself, the better you'll manage your symptoms and navigate your treatment.

You don't have to agree to the first treatments and doses our MG doctor recommends

When considering treatments, it's crucial to discuss all options and risks with our MG doctor. I suggest starting with lower doses and one treatment at a time. You'll soon begin a 5-day round of IVIG, which helps stabilize our voice and regain strength. Instead of starting high doses of prednisone, mestinon, and CellCept all at once, you should advocate for a gradual introduction and dose increases to monitor effects. This cautious approach allows for a better understanding of our treatments and side effects and helps avoid unnecessary medication.

Always voice your concerns and questions to our MG specialist

After 4 years, we still see the same MG doctor. While a younger doctor may be more familiar with newer treatments, we must advocate for ourselves by staying informed about MG and learning from other patients.

Maintaining open communication with our MG specialist is crucial. Remember, it's okay to disagree with them. I nudge you to bring a note sheet to appointments detailing symptoms since the last visit, key discussion points, and questions. Don't let them rush you, and confidently mention the time remaining if needed. Ask your questions! The sooner we communicate, the more comfortable we'll be with our treatment plan.

Double check all medications and drugs for contradictions with MG

It's essential to double-check all proposed drugs and medications before use, even though the process can feel time-consuming and confusing. You will learn after mistakes where 2 different doctors try to prescribe you magnesium that you need to always have our MG specialist approve and communicate with our other healthcare providers about proposed drugs and treatments for other conditions before you start them. Trust only yourself and your MG doctor regarding confirming the safety of drugs or medicines with MG.

Don't hold back from seeking support

This journey, especially the diagnosis you just received, can feel isolating. But you have Dad, Mom, your sister, and close friends who genuinely care about you. And you don't know it yet, but you form such lovely and genuine connections with others with MG. We try some but discover that support group video chats aren't our thing. Yet we find tons of value after finally discovering MG forums and discussions with social media pages with others sharing their personal experiences and how they cope.

A path to MG growth

The journey you are about to embark on with myasthenia gravis illuminates our ability to speak up for ourself, take our healthcare into our own hands, become intentional about our lifestyle choices, and the importance of self-compassion for ourself and others. I urge you, my younger self, currently in a time of hardship, to embrace the unpredictability of symptoms and this condition and focus on what is in your control. The key is to understand our body and cultivate support in our life.