Bold advocacy, trusting yourself key to diagnosis journey

So it took me five years and five neurologists to finally get diagnosed with myasthenia gravis. It was a long journey filled with medical gaslighting. A lot of dismissive interactions with providers, a lot of questioning my own sanity. Did I have a psychosomatic disorder? Was I actually making this up? Because it really starts to get to you.

After multiple providers and years and years of being told, “Well, your labs are normal,” I, like, dubbed myself the queen of normal test results because the antibody tests would always come back normal. But I had this progressing weakness, especially in my arms and my legs.

I was constantly breaking dishes because I couldn’t lift plates up and over the sink, or I would be brushing my teeth and I would have to relax my — both my jaw and my arm — because it became so weak. And eventually, at the very end of my journey, right before I was diagnosed, I was even losing the ability to drive for days at a time because my legs were so weak. I had constant black and blue toes because of what I now know as foot drop on my right foot.

So despite all of these symptoms that aligned with myasthenia gravis, because those antibody tests kept coming back normal and a “normal” EMG also kept coming back normal, I just kept getting dismissed. I had to learn to trust my gut, and I found myself really struggling to speak up in appointments.

I really viewed providers as they were supposed to be this, like, trusted authoritarian figure. And I was supposed to be taking their lead. But I was walking out of these appointments with no answers to my intermittent ptosis, and my vision issues, and progressing weakness.

I actually went back to school to become a board certified patient advocate, and I took the lessons that I had learned along a difficult journey of getting diagnosed with Sjogren’s and dysautonomia and eventually myasthenia gravis, combined with going back to school, and really learned how to use my voice and advocate for myself.

And I reached out to the MG community on various forums and asked for recommendations in my state and surrounding states for seronegative-friendly MG neuromuscular neurologists. I took about a list of five, and then I became a detective. I went on the internet. I looked at reviews. I tried to see if those reviews were mentioning seronegative MG.

I had, like, my top three list of doctors that I wanted to see, called those offices and asked, “Are you accepting new patients? What is typically the wait? And do you accept my insurance?” And from that list, I had a top doctor from my list that I wanted to see, made an appointment, waited months for an appointment, and it was right around the five-year mark after my symptoms started that I saw him.

And he was like, “Of course it’s MG, what else would it be? Just because we don’t know your antibody yet doesn’t mean that you don’t have it. We’ve ruled everything else out. Your positive response to the MG medication, your symptoms, the abnormal single-fiber EMG.” I also had multiple lung function tests that suggested neuromuscular weakness. So he said, “Of course, that’s what it is.” And I was finally diagnosed five years later.

There are so many things I would tell other patients who suspect they have MG and they’re having a difficult journey like I am. So many things that I would want to say for advice or things that I would even tell myself early on in my journey. But I think my top two pieces of advice would be: trust your gut.

I think when we’re constantly dismissed, and family and friends don’t quite understand a lot of the symptoms of MG — they’re very invisible — and it’s very hard for people to just trust and believe how you feel, sadly, and it starts to mess with your own confidence about how you feel. Fight against that. Believe in yourself. What you are feeling is real. Your symptoms are real. Even if you have normal test results, that doesn’t mean that your symptoms are not real. So believe in yourself and know that you are worthy of proper care and treatment and diagnosis.

The second piece of advice I would give is to learn how to be your own best advocate. There were so many lessons that I learned. I made some really cringey mistakes in my journey from misusing the patient portal or getting defensive in an appointment when I was met with medical gaslighting instead of trying to use effective communication techniques.

I sort of took all these mistakes that I made, lessons that I learned, things that I learned going back to school to become a patient advocate, and wrote my book, “How to Become a Badass in a Broken Health Care System.” That really talks about how to have effective communication with various types of providers, whether I call them “rushers,” you know, like they’re already reaching for the door five minutes into the appointment.

And instead of saying, “Wait, where are you going?” we can say things like, “I have two more questions on my list we haven’t got to yet. Can I ask those in this appointment, or would you like me to make an immediate follow-up appointment?”

Or using the patient portal — instead of writing a novel — that you have very concise and short patient portal messages that clearly state what you’re looking for, what kind of test or answer or advice that you’re looking for without giving a lot of extra information.

Because while the system is really broken, you know, we have to remember that these providers are seeing an insane amount of patients every day with even more portal messages that they have to get to every day. And so we do need to find a way to have a collaborative partnership.

And if you can’t, after multiple attempts of trying to have a productive relationship with your provider, it is OK to walk away. You do not have to stay with bad providers.

Again, it took me five neurologists and five years to finally get diagnosed, and I have no doubt that I still would be undiagnosed today if I would have stayed with neurologist one, two, three or four. So do not be afraid to walk away from bad providers.