The Struggle to Find Knowledgeable Physicians

As I read comments from others on the Myasthenia-Gravis.com Facebook page, I see many about physicians that seem to be unfamiliar with myasthenia gravis (MG).

For some, taking years for a diagnosis to be told, "it’s all in your head" by a physician, is inconceivable. In my opinion, it's irresponsible! I have also had some of the same issues, but they are minor issues in comparison.

Dealing with misdiagnoses

My first encounter with physicians that didn’t recognize my symptoms lead to a misdiagnosis of Bell’s palsy.

When my ptosis and difficulty breathing first began, I was taken to the emergency room at a local hospital. After hours of tests and scans, they decided I had Bell’s palsy and sent me home.

Anyone with myasthenia gravis knows the dangers of going home while you are struggling to breathe, and this was a 4-day holiday weekend!

Countless tests

I went to see my primary care physician after that visit. Although she didn’t know what was wrong with me, she knew my condition was serious as soon as she saw me. I was immediately sent to the emergency room at a different hospital. I was there for several hours.

Again, many tests were done, but still, the doctor didn’t know what was wrong. At shift change for the doctors, the one going off duty brought the 1 coming on duty to my room. He talked to me, looked at me, and without so much as an examination, stated he was sure I had myasthenia gravis.

I was admitted and had countless more tests. This went on for about a week before they did the Tensilon test to correctly diagnose me.

Seeing a specialist

A few weeks after all the tests and treatment, my neurologist, who I thought was knowledgeable about myasthenia gravis, admitted he wasn’t!

He wanted to send me to a neurologist that specializes in neuromuscular diseases and he made an appointment for me. Once I talked with this neurologist, I felt so at ease ... at least more than I had been in some time.

This doctor was also affiliated with the Muscular Dystrophy Association, so they treated all related diseases. This helped my confidence.

Having to explain MG

Most of my primary care physicians and some of the neurologists were unfamiliar with myasthenia gravis. None of them knew the drug interactions or even why I was on the medication I was on.

I’ve even been given prescriptions for medications that potentially could aggravate myasthenia because they don’t know.

I’ve always provided my physicians with more than adequate information about my medical history and the medications I take, but I’ve still had to explain some of my symptoms to them, not to mention what the medications are that I take for myasthenia.

Potential drug interactions

I was also having a lot of pain in my back, due to the lumbar stenosis, so I went to a pain clinic. I asked for help in controlling the pain that wouldn’t compromise my respirations.

I explained that because of my asthma and myasthenia gravis, I was not only afraid of taking narcotics but pretty much anything that could be detrimental to someone with a compromised respiratory system. I was prescribed a synthetic opioid and a muscle relaxant!

Because of the experiences I’ve had personally and those I’ve read about, people with MG and our loved ones have to remain vigilant and responsible for our care. From now on, I intend to make a list and hand it to them, along with my drug list and medical history!

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