In keeping with my promise to provide a joke a day for the remainder of August, here’s today’s joke.
A man goes to the doctor and says, “Doctor, I think I’m shrinking!”
The doctor replies, “Well, you’ll just have to be a little patient.”
For many of us with Myasthenia Gravis, this joke is quite apropos. It took years for many of us to get diagnosed. Not only are our symptoms like snowflakes, appearing and melting away before we can show our doctor, the blood tests are not always conclusive. As I’ve stated in many of my previous blogs, I’m seronegative. That means I tested negative for AChR, MuSK and LRP4. As my doctor explained to me, clinically he can tell I have Myasthenia Gravis because my symptoms are text book and I respond well to medication. The first doctor that suspected MG in me did so 35 years ago. I was finally diagnosed in 2023.
Being a little patient is important.
I recently heard from a very nice lady who is struggling with test results that consistently turn up negative for MG. Many of us have been there and feel her pain. It’s not that we want to hear that we have Myasthenia Gravis, it’s just that we don’t want to go on wondering if the symptoms we’re experiencing are all in our head. The more tests that come up negative, the more we begin to doubt ourselves. The more we doubt ourselves, the greater the danger of depression.
When I was going through tests 35 years ago, it was extremely frustrating. I first started having problems with my eyes. My eye doctor referred me to my primary care physician. After a few tests, my primary care referred me to a neurologist. The neurologist thought it might be Multiple Sclerosis. Brain scans showed there was no plaque in my brain, so MS was ruled out. He then tested me for Amyotrophic Lateral Sclerosis (ALS). Thankfully, that test turned out negative, as well. He then threw his hands up in the air and informed me he didn’t know what I had. It’s not very comforting when you hear those words come out of your doctor’s mouth. I got so frustrated, I quit going to doctors.
Several months later, I was injured playing hockey. I saw my primary care physician and learned I had broken a rib. During that appointment, she asked me how I made out with the neurologist. I told her about the tests he had run and how he had thrown his hands up in the air, so I just gave up. She wasn’t pleased and insisted I see a different neurologist. I reluctantly complied.
My new neurologist was much more professional and listened to what I was experiencing. She examined me and felt I may have Myasthenia Gravis. I didn’t even know what that was at the time. I went through a blood test for the AChR marker, the only blood test available for MG at the time, and that turned up negative. She explained to me the next step was to do a biopsy of the eyelid (a test that was used at the time, but is no longer utilized today to diagnose MG), but there was a problem. That problem involved how insurance companies issued health and life insurance policies. As she explained, once there was a positive diagnosis for MG, insurance companies would probably exclude any claims for anything related to Myasthenia Gravis. That’s because it would be considered a pre-existing condition and insurance companies at the time could write policies to exclude any pre-existing conditions. She explained, while my current health insurance carrier would probably cover medical expenses for MG, if my company changed carriers or I changed jobs, the new company did not have to cover those pre-existing conditions. I couldn’t afford to have something like that happen.
Since my symptoms weren’t really bad, I chose not to pursue any further treatment or testing. In other words, I learned to live with it. My neurologist respected my decision, advised me to come see her immediately if symptoms worsened and reminded me to tell my other doctors that I was “Suspect for Myasthenia Gravis”.
After about a year, my symptoms began to lessen and some even went away. I had previously experienced pretty severe weakness in my legs after using them, but this started to improve. I still had minor discomforts, but they were all tolerable. At that point, I really started believing maybe this had all been in my head. I blamed myself for imagining symptoms I once swore were real. I actually doubted myself and as a result, became depressed. I didn’t seek any medical treatment for depression. I was still mad at myself for imagining symptoms of MG. I wondered how I could have allowed myself to fall into that trap. I didn’t like myself.
Fast forward about 35 years. I contracted COVID-19. It was rough, but I got through it. A few months after having COVID, my MG symptoms started to return. This time they were worse. We were now living in a different state. I saw my new primary care physician, who referred me to a neurologist. My new neurologist reran the AChR blood test along with a host of newer tests. All of them came back negative. I was thinking to myself, “here we go again.” My neurologist started me on Pyridostigmine (that’s the generic name for Mestinon) and I saw immediate improvement. My eyelids weren’t drooping as bad, my voice wasn’t getting hoarse as frequently and my legs weren’t nearly as tired. After a few more clinical tests, he diagnosed me with seronegative Myasthenia Gravis. I was seronegative because I hadn’t tested positive to any of the known markers, but my clinical signs, along with the significant improvement upon taking Mestinon was enough for him to make a diagnosis of Myasthenia Gravis. As he explained to me, we don’t yet know all the markers for MG and we have probably not yet found the marker to which I would test positive.
35 years.
That’s how long it took me to get diagnosed. Much of that 35 years was spent doubting myself, thinking it was all in my head, thinking I was imagining symptoms. The symptoms I had felt were real. I just needed to be a little patient.
I also found out that the period in which I had actually improved during that 35 years was a period in which I had gone into remission. MG had come back after being triggered by COVID.
Now that insurance companies can no longer exclude pre-existing conditions, I no longer had to be afraid of the repercussions of a positive diagnosis. Most of all, a positive diagnosis was validation for me that I hadn’t imagined the symptoms, it wasn’t all in my head. It was real. We still don’t know exactly the kind of MG I have and tests continue, but it was a relief to know I wasn’t just imagining it. No one wants a positive diagnosis for any disease, but in the case of MG, sometimes a positive diagnosis is better than thinking you’re crazy.
My best advice to the very nice lady who wrote me, and anyone else going through the diagnostic phase of MG, is to be a little patient. Our doctors are doing the best they can with what they currently have. They just need research to advance and find not only markers for MG, but a cure.
I will say, however, if you don’t feel comfortable with the way you’re being treated by your doctor, you not only have the right, but also the duty to yourself to fire them and find another doctor. My first neurologist didn’t know how to proceed, threw his hands in the air and made me doubt myself. My second neurologist suspected it was MG right away.
Doctors are human. That’s why they only practice medicine.