Firing My Neurologist

I wrote an article called "My Experience with Doctors and Misdiagnoses" where I talked about how I finally got to meet with a neurologist who was able to figure out that I probably had myasthenia gravis (MG) based off of symptoms alone. I started a trial of Mestinon the same day blood was taken.

After a positive trial of Mestinon, along with negative blood test, I was diagnosed seronegative MG. Therefore, I will always be grateful that after 48 years of living with symptoms, someone was finally able to give me a true diagnosis ... or so I thought.

Different diagnoses

When my flare first started, it was when we began hearing about COVID-19. Three months later we were in lock down! I had seen a new neurologist who diagnosed me with sleep apnea, but I never actually met him. He retired shortly after the COVID-19 lock down.

The neurologist that actually diagnosed my MG had replaced the one who retired. I saw him briefly twice, then decided to try elsewhere to go see a multiple sclerosis specialist. For 30 years, doctors told me I had MS, but other than symptoms and one old lesion in my brain, there was nothing else to confirm it.

However, in December of 2019 at the beginning of this large new flare, I had an MRI that showed 2 new active lesions in the right place for MS. Medical staff at the hospital told me that my MS was flaring.

The MS specialist diagnosed me with functional neurological disorder (FND). Actually, it was the student doctor. The MS specialist just came in and gave me the diagnosis. To this day I can't figure out how she was able to diagnose me without actually talking to me herself.

Sent for more testing

So, I went back to the first neurologist. This is when he started me on the trial of Mestinon and ordered blood tests. I was so glad I went back!

After a couple more appointments he told me there was something else going on, but we have to get the MG under control first. And yes, he did know about the FND diagnosis. He sent me for more testing, saying, "Let's get this off your record!" There was never a reason to question whether he had my back.

A huge surprise

He sent me to a neuro-ophthalmologist handpicked by him. I was pretty excited because I knew he had my back. Boy was I wrong. The student doctor for the neuro-ophthalmologist was the same doctor from the MS specialist that diagnosed me with FND.

The even bigger surprise was when the neuro-ophthalmologist told me she was given the actual referral letter from my neurologist. Who else got this letter?

I can't trust my doctor

At my last appointment with my neurologist, I asked about his referral letter. His response, said angrily was, "I have always felt that’s what it was," referring to the FND diagnosis. This is emotional abuse.

No other testing for anything else was done! I am now finding out, with positive tests, that I have other conditions that cause neurological symptoms just like what they are calling FND! I found out I can’t trust him.