Misdiagnosed With My Second Attack

Picture it: New York, 2007. I was 18 and felt indestructible, or so I thought I was. I had my first NMO attack less than a year prior but shrugged it off. I was never seen by a doctor for that, let alone anyone else in my life knowing about it. But then came the second attack. I honestly don’t remember when and where it happened, but I remember the following doctor's visit.

Referred to a specialist

This second time around I had the smarts to tell my family about the attack. Once family knew, we set up a regular eye visit. I had been going to this place my whole life, but I left the woman pretty clueless with this new issue. She then quickly referred me to a specialist.

I wish she didn’t do it, or at least referred me to a different person. One thing that makes a difference is how a doctor speaks to you. I understand when seeing a medical professional, you’ll hear things that make no sense and make your head spin in fear. But it’s how they deliver those things that can make a huge difference.

Extra testing

So I make my way to this referral appointment with my aunt and uncle. I don’t remember feeling afraid or nervous yet. To me this was just another eye appointment with some extra testing.

Well these tests would soon become normalized to me as my NMO got worse. But it was fine at this point and I had no issues yet.

Most likely MS

The way this doctor discussed my results was less than desirable. He had a rushed tone to his voice, an older gentleman. He started out by just saying, “It’s most likely MS.” Then came big words and terrifying explanations.

My gut was turning and all I could hear was MS.

I was 19 and I knew what MS was but I refused to believe it. By the time we left I knew I wasn’t going back there. He didn’t even recommend or refer me to anyone else. So I ignored it all. My aunt agreed that he was not very professional and needed some training.

The doctor and patient relationship

To this day, I believe if I had met with someone with a better bedside manner and care, I think I would have went to get checked out further. Maybe I'd have more vision, maybe not. I do wish doctors could see how words and tones can make a huge difference with patients. When you’re young, it’s easy to not care about things when you don’t fully get it.

Also doctors should push us to ask more questions, to see if the patient understands. I used to be terrified to speak up and now doctors can’t get me to shut up.

It was a lesson learned and one I hope to not repeat.