How easy it is for doctors to miss myasthenia Gravis
I have read of so many cases where patients suffer with myasthenia Gravis for years before the diagnosis is made. I would like to share my life experiences on how easy it is to miss this diagnosis.
In January 2018, I was in India on an extended pilgrimage when I had a problem with my eye. I woke up as normal, but by mid morning, my one eye began to droop. I figured that maybe I hadn’t slept properly, and I was probably tired. So I took a nap. After that it was okay but gradually began drooping again. After a few days I went to an Eye Speciality hospital to have it seen to. The doctor asked me if I had any other symptoms. Obviously being an eye doctor I did not expect to be telling him about other health issues. It was then diagnosed as ptosis due to weakened muscles because of my age. The operation was performed successfully, and I was back to normal. However a month later, It drooped again. A second operation was also successful, but I noticed that in the mornings after a good nights sleep, I would be fine, but as the day progressed it would be a problem, though not total droop. I then researched on the internet, and realized that I had other symptoms which I had not linked to my eyes. Weakness in my legs when climbing steps, swallowing difficulties and breathing problems, had also started around the same time. I then spoke to the doctor and told her that I suspected Myasthenia Gravis. Her answer was that they had considered it in the beginning, but I had not mentioned these symptoms. Had the doctor explained that they wanted to know if I had any other symptoms anywhere else in the body, I would have told them. Anyhow, she did an ice test on the eyelid, and there was no change. I left it as it was and then returned to my home country , Zimbabwe.
For about three months, my eye was okay and I was used to it getting ‘tired’ as the day went. But suddenly, my other eye drooped totally, and would not open sufficiently for me to see. I then went to see a general practitioner doctor and explained my suspicions. He immediately discounted it and started doing tests for other conditions. I knew that no one would help me to confirm I had MG. I then discovered a blood test for Acetylcholine Receptor anti bodies. I read that absence of anti bodies did not rule out MG, but a positive result would confirm it. I arranged for a laboratory to have the test done in South Africa, and then gave the result to my GP. He then referred me to a neurologist who did a nerve conduction study which confirmed the diagnosis as Ocular Myasthenia. I was then prescribed pyridostigmine. I have not been back to the neurologist, and now try to judge my dosage according to how I feel. I have kept my medication to a minimum, and when I feel that it’s getting worse, increase the dosage. It is my belief that only the person suffering can judge how much medication will suffice. This might not work for others. But so far, I have had 2 crises in these last 2 years. One was from too much pyridostigmine. I had called my neurologist and from my symptoms, he judged that it was a cholinergic crisis and advised me to stop taking my medication for a day or two. At this point I should mention that I live about 80 kilometers away from the nearest specialist.
My second crisis was from too little medication, which I did not realize. When I got worse, I quickly took a tablet, and I was okay. This might seem dangerous, but in my case, I think that if I had stuck to a fixed dosage, I might have ended up being hospitalized. I believe that we should also do our own research because doctors can easily be directed to what’s most common in their experiences.
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