Uveitis Helped Me Get a Diagnosis

Last updated: October 2022

I don’t know where I'm going to start. I used to be a very active person, I love going out and visiting different places. I am an interior designer and 10 years ago I start feeling some pain in my left shoulder. I kept telling myself it’s normal because most of the time I carry my heavy tools with me so maybe that’s why...

In 2020 I woke up one day with pain in my left foot I kept saying, "What is that? What happened to me?" I couldn't stand on my feet. I went to the doctor and they said to me, "Maybe u are just tired. you have 2 kids and you do everything on your own. It’s normal sometimes." He gave me magnesium and painkillers.

I didn’t want to think about it too much, I said okay that’s good for sure - a few days and I will be fine.

Uveitis led to my diagnosis

In 2021, out of nowhere, I start seeing black dots everywhere, all the time. I felt like I really can’t see because of these dots, and here we go I went to the ophthalmologist, and he asked me if I have any immune disease. I said, "noooo doctor, I don’t have any I am totally fine."
So he wrote me some eye drops and left as usual, telling me it’s okay and a few days I will be fine, Monay, don’t worry...

I woke up one day in the middle of the night with pain in my eyes with too many tears and full of red. I couldn’t wait till morning to see the ophthalmologist. I ran to the hospital in the middle of the night and they start checking everything. They found out that I have uveitis, optic neuritis, and retinal infiltrates in my left eye.

They told me I have to visit the rheumatologist and immunologist. I became super scared I didn't know what was gonna happen, and why all of that? I did 32 blood tests for immunity. Everyone in the hospital was asking me what was wrong.. then I fainted from fear.

Starting biologics

I did everything... X-ray & MRI ... btw I am (HLA B27 negative) And this time, I diagnosed with ankylosing spondylitis. It wasn’t easy I couldn’t even understand...

I started with one of the biological injections and methotrexate, but it wasn’t good for me at all. After 6 months the side effects got me. I had a chest infection, so I stopped and now am not taking anything. I am waiting for approval from my insurance for another biologic injection.

So till they approve, I am trying to read more about ankylosing spondylitis and understand. Also, I am trying to change my lifestyle and deal with all this pain in my foot, knees, and back. Also, I am pushing myself to be active because my kids are still so small, and they want to play and go out all the time.

Pain and fatigue

It’s so sad that some days I wake up with fatigue and pain that makes me stay in bed but I push myself for them, because if I will not do it, I don’t have anyone else to help my kids. So I have to be strong enough for them 🙏🏽.

Thank You, everyone
Peace & love
Monay

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