When You Know, You Know
Last updated: October 2021
I wasn’t very sickly as a child, but as I started to get older, I realized that I was having more health issues. People used to think I was a hypochondriac or dramatic (listen, I have no qualms about my flair for drama, I wanted to be an actress), but every time I would go to the doctor, they could never find anything. I would wake up with random pain, or I would be overly tired. I would have random bouts of vomiting with no known cause.
I had a feeling something else was wrong
When I was diagnosed with diabetes, some of the symptoms started to make sense. Something still didn’t sit right with me though. Even though I was on medication, the symptoms seemed to get worse. I had unexplained bruises and memory lapses. The fatigue didn’t get much better no matter how much sleep I got, and still every time I go to the doctor I’m dismissed, or they find nothing. My primary doctor finally diagnosed me with fibromyalgia, and there was some vindication from the doctors that dismissed me before, but still, things got worse.
I wasn't being believed, so I just stopped talking
I started to get to a point where I just stopped talking about the things that were bothering me because they wouldn’t find anything anyway, and then it happened. I woke up on June 14, 2020, with blurry vision. No big deal, right? You know how sometimes you wake up and it takes a while for your eyes to adjust? I thought that’s all it was but hours later my vision still hadn’t cleared up.
The worst medical care I'd ever received
Three hours had passed since I woke up, and my vision was still blurry, so I got myself together and went to the emergency room. When I got to the emergency room it was around 1:30 pm. The care that I received in that ER was some of the worst care I have ever received in my life. When I explained what was going on, they looked at me like I had 2 heads. Then unbeknownst to me, they drug tested me.
I was alone as I started to go more and more blind
I was sent for 2 CT-Scans, and after the last one, which was at about 5 pm, they said that I also needed an MRI, but the tech was not in and I had to wait for the on-call person. Then I just sat. No one checked on me or asked if I needed anything. Then at 8:30 pm, I noticed that everything had gone completely dark in my left eye. I called the nurse over and she told me there was nothing anyone could do until I got the MRI and left me. I sat for another 4 hours...
He didn't think that it was "medically necessary"
At 12:30 am, the new ER doctor on call came over and said that the MRI tech had come in, but the machine was broken, and I would have to be transferred to another hospital. Oh, and I forgot to mention that during this time, the previous ER doctor that was on-call said that he didn’t even know why I needed an MRI because he didn’t think that it was medically necessary.
At last the cause was found: NMOSD
The new doc did a quick examination before the transfer and said that he thought the transfer is a good idea. I got to the new hospital, and they immediately performed the MRI, while waiting to find me a room. I have never been so poked and prodded before. I started with high-dose steroids for 5 days, while also having to do lumbar punctures (not fun, and I had 2 of them), and several different MRIs and tests to check my eyes and brain. After the steroids, I did 5 days of PLEX (plasma exchange or plasmapheresis), and after 2 long weeks in the hospital (and a few doctors who were also doubtful) I was diagnosed with NMOSD. Medically, all my testing was negative, but clinically I fit the diagnosis.
Being diabetic makes things hard
I feel that being diabetic has made It hard for me to be diagnosed sometimes. I'm not going to lie, my diabetes management was not and has not always been the best. In part, it’s because I have had doctors that don’t listen, and that made me not trust too many medical professionals. On the other hand, when you have lived life one way for so long sometimes it’s hard to make the change. Now, most doctors are quick to say "oh, it's just your diabetes."
When you know, you know
While in the hospital, a few of the doctors said that the vision loss was due to diabetes, although I had just had an eye exam less than a year prior and had been having no vision issues. Even my rheumatologist who I see regularly told me that my vision loss was just my “really bad diabetes”. Here we are a year later, and I am legally blind, but this is only the beginning. Like I originally said, when you know, YOU KNOW.
Did medical professionals doubt your initial NMO symptoms?
Has NMO impacted your ability to keep a job?