a woman being pulled in different directions by two different doctors

My Experiences with Doctors and Misdiagnosis

It's been a long hard battle for a diagnosis over the years. The past 2 years have been both the best and the worst. After 10 years of remission from an unknown neurological disorder, I went into a flare. We only have one neurologist in the area, but I finally got in to see him. Then came COVID and he retired. I was on a quest for a new neurologist.

My misdiagnosis

I ended up at the university and I was given an appointment with a neurologist who specialized in multiple sclerosis (MS). She also happened to be a neuropsychologist. When I arrived, I had an MRI that showed 2 new active brain lesions. These findings were consistent with MS. It was a coincidence that I was scheduled with an MS specialist.

I saw the student doctors first which took about 15 minutes, then I finally got to meet the actual neurologist. As soon as she came in, she diagnosed me with functional neurological disorder (FND)! This was before she actually saw me.

She scheduled a whole bunch of blood tests, MRIs, and more, just to make sure nothing else was going on. Most of the blood tests were the same any person would have for a wellness exam. When I got home and was able to get in to the online portal she apparently already entered in the diagnosis of FND.

Another chance

A few days later I was scheduled to see my primary care provider. When she came in the room to meet with me, I described my experience at the neurologist. She said, "they're trying to railroad you, this is not what you have!"

I decided to give the neurologist that took over for my old one a chance. I'm so glad I did! After doing some in office testing, he said, "I think you may have myasthenia gravis. We are going to do a trial of Mestinon." This was October 2020.

Still not making progress

Six months after the FND diagnosis, and after being on Mestinon for 2 months, I was doing much better ... until a bout of bronchitis. At the request of my neurologist, he wanted me to do 5 days in the hospital for IVIG because my breath count was so low.

Our local hospital does not provide IVIG, so I was taken by ambulance to that same university. When I arrived, I was denied treatment even though they diagnosed me with an exacerbation of myasthenia gravis. Also, they still had the FND diagnosis on file from the previous visit.

I was referred out of state to see a myasthenia gravis specialist. Immediately, I was sent an itinerary of 15 hours of tests they would conduct. When we got up there, they had canceled all but 2 of the tests - a single fiber EMG that was negative.

I was diagnosed with "mild" seronegative myasthenia gravis, along with FND. I was also told to just to go off of all of my medicines for myasthenia gravis! All because of one neurologist's opinion of FND.

More appointments

My neurologist wanted me to see a neuro-ophthalmologist. Unfortunately, the one in my area just happened to be at the university. It was the same student doctor as before. I got a diagnosis of myasthenia gravis ptosis in both eyes and conversion disorder ... also known as FND. Surprise!

My neurologist

I'm truly thankful for my neurologist! A lot of his residency was with myasthenia gravis patients. He's the closest thing to a specialist around here.

He has supported me all the way through this, standing by me and the diagnosis despite what I went through with other doctors. Upon his request I did see a psychiatrist so I could get the FND diagnosis off of my medical records.

Here's the funny part: I was diagnosed with depression (which I already knew I had) and post-traumatic stress disorder because I have been treated poorly by doctors over the years! However, there were no findings of FND.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Myasthenia-Gravis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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