problem NMO doctors care team

My Experiences with Problematic Doctors

Last updated: December 2022

It has been over two years that I've lived since finding out I have NMO. I've endured my fair share of experiences with problematic doctors. I'm sure we've all been there, and not all doctors are created equal. However, I sure do have some stories to tell. Unfortunately, these stories are more bad than good.

My first doctor's misdiagnosis

My first attack with NMO was in 2013. At the time, I didn't know what it was, and I spent a lot of time back and forth at the hospitals. Not one doctor could figure out what was going on with me.

I eventually ended up at a neurologist, and with obvious neurological issues, I was misdiagnosed with BPPV. Now I realize that NMO is a rare disease and can be challenging to diagnose. On the other hand, there was no excuse to ignore many of my issues, considering they were very obvious. After the misdiagnosis, I lived with this disease for seven years before it manifested itself again.

A careless NMO diagnosis

it took some time to get to my second diagnosis. There were approximately 6 ER visits before I was finally diagnosed with NMO. I was relieved to find out what was going on with me; however, what happened after was unacceptable.

Lasting consequences

The doctor who diagnosed me failed to follow much of the NMO protocol. This lead to my permanent disability. Instead of taking the time to research and make sure I would be taken care of as a patient, it seemed like she chose not to adhere to the standards. Eventually, I ended up finding a new doctor.

A second attempt to redeem my quality of care

I thought this new doctor was the perfect fit, that I would finally get some answers and better quality of care. Unfortunately, I was very wrong.

I began to notice each time I went in, she would evaluate me but wouldn't provide a clear care plan. It seemed like no matter how many times I would tell her my issues, she would either take a very long time to respond or not address the issue at all.

Red flag: forgetting the essential diagnostic tools

Not once did she order any MRIs. She failed to provide proper medication. The list goes on. I was back to square one and needed to find a new doctor.

Continuing the search

Within one year, I was already on my third doctor, another neurologist. I'll never forget my first appointment with this one. She told me she didn't know much about NMO - after accepting me as a patient. Instantly, I knew I had wasted my time. I didn't even bother making a follow-up appointment.

I moved on to my 4th neurologist. I spent a lot of time looking for someone qualified to treat NMO and who would accept my insurance. Finally, I came across the neurologist I am seeing, and the relationship is decent so far.

Finally, some stability?

I wouldn't say my current team is a match made in heaven. On the other hand, it's the best it's going to be right now.

Many don't realize the difficulty and the trauma that goes along with dealing with poor treatment by doctors. Finding the right doctor is imperative to our health.

On the upside, NMO is becoming a disease that more doctors are starting to learn about. With that, I remain optimistic that we will have fewer conversations about problematic doctors one day.

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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 Neuromyelitis-Optica.net 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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