Shop Myasthenia Gravis Awareness shirts on Amazon here!
June is Myasthenia Gravis awareness month. I had never heard of this autoimmune disease until I started googling things like “difficulty smiling and slurred speech” and “difficulty chewing.” I first started researching my symptoms back in July of 2021, the week after I gave birth to my daughter. I didn’t get a diagnosis until March of 2022.
I have been posting more frequently about my MG diagnosis and treatment experience because it’s important to raise awareness of this illness and I also want to be transparent about my struggle this last year. It was a really tough eight months of fighting to get my diagnosis while living with MG symptoms, working full time, and having a new baby.
Most of my doctors wanted to rule things out like MS and Bells Palsy but didn’t go beyond that. When they didn’t get a diagnosis, I was told it was stress or anxiety and to see a psychiatrist.
Imagine that….. I couldn’t drink out of a straw. I was slurring my speech. I had hand and finger weakness. I couldn’t smile half the time….. and to be told it was all stress was so frustrating. No matter how hard I “tried,” I couldn’t overcome the weakness I was experiencing, because my body was attacking where the nerves and muscles meet. I even started having choking fits during meals – that was the most terrifying.
I had to research and take my health into my own hands. I read medical abstracts and scoured reputable websites. It was like I was in college all over again working on a research paper. Ultimately my own research is what resulted in my diagnosis in March.
I underwent surgery to remove my thymus in April with the hope of going into remission. I’ve had a lot of people ask me if my symptoms have gone away yet. The answer is no, they have not. But my medication helps mask some of them and prevents others from cropping up. I likely won’t know if I went in to remission for another 1-2 years because it can take that long after a thymectomy to see results.
No one should have to suffer without a diagnosis. This is why awareness really is important for rare diseases – so that you know what symptoms shouldn’t be ignored. Myasthenia Gravis can be life threatening if it attacks your diaphragm muscles – luckily I haven’t experienced that but 20% of people diagnosed with MG do at some point. This is called a Myasthenic Crisis which can land an MG patient in the ICU or even on a ventilator.
Symptoms:
If you or someone you know experiences any combination of the below symptoms, please see a doctor and ask to be tested for Myasthenia Gravis. Knowledge is power and could save a life.
– Blurred or double vision
– Drooping eyelid
– Slurred speech or nasally speech
– Difficulty smiling / making facial expressions
– Difficulty chewing
– Arm or leg weakness
– Hand or finger weakness
– Neck muscle weakness
– Choking when trying to swallow
– Difficulty breathing / shortness of breath
#MGStrong #MyastheniaGravis