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NMO and I Get Checked

I’m exhausted. I finally completed two neuromyelitis optica (NMO) appointments I promised to get done this year. Well, now I have more appointments. The main thing that stresses me about doctor visits is the possibility of something new being found. Well, that’s what happened.

Being back in New York meant connecting back with my old doctors again. It’s been almost four years since I've been with them. It was a welcome back that pleased me. My neurologist was all up to date on what I had been doing at the North Carolina clinic. She shared some positives and concerns, as normal.

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Infusion and MRI

After the visit and some blood work, she made sure to set up my next infusion which I needed. It had been eight months since my last infusion and I just felt it that I needed it right away. The infusion went smoother than ever. One thing I noticed is in New York they gave me more allergy meds and more of the steroid than I usually do for Rituxan. But I had no issues at all, and the days after were great.

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After that came time for an MRI. The concern of my vision getting worse raised some alarms and they wanted to take a look. As a heads up, I hate getting MRIs done. I get restless and warm really quick. It was a long two hour event, but they did play music for me for the first time and it made it a little better.

MRI results

The MRI results showed that things are stable and fine. But…there is always a but. My neurologist pointed out that my thyroid was enlarged in 2016, something no one has ever brought to my attention. Since then it has grown and honestly something I have noticed on my throat but no one has ever mentioned it or asked, so I let it go. She didn't seem too concerned, but now I’ll be meeting with a specialist to look further into my thyroid.

Help finding other doctors

Along with all of this, the doctor is also helping me find a primary. I haven’t had one since the pandemic and the one I did have left the practice. Honestly I was happy to stop seeing that doctor, she dismissed some issues I’ve had many times and blamed it on a UTI or STD, neither of which I had. So this time I am hopeful they will help me find a trustworthy doctor that listens.

After finding a new primary, I will then attend a basic eye appointment and an ophthalmologist appointment. Then from there, who knows. I’ve been denied from several dermatologists who are not accepting new patients but my doctor is fighting to get me in to see one. My skin issues have been worse and finding the right treatment is hard on my own. But I continue to suck it up and wait patiently.

NMO is exhausting

One thing I wish I was told when I was younger would have been that NMO is exhausting. Any medical issue is exhausting, so don’t procrastinate or your next two months will become booked with appointments. I almost feel like I’m getting smothered by doctors. I know it’s all for the best and for my health, but I am pooped.

Does anyone else procrastinate seeing doctors? Has your NMO been impacted by this? Do you find all the doctor appointments exhausting?

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