an xray reveals someone with NMO hip pain

Steroids Saved My Life but Damaged My Joints

I turned 39 on February 8th, 2023. I celebrated my birthday in the hospital, recovering from my 2nd hip replacement.

In 2012, I first got sick from, unbeknownst to me, NMO. Nausea turned into uncontrollable vomiting. No one knew why. I was in 3 different hospitals for 5 weeks.

The first 2 hospital visits

At the first one, I had my gallbladder removed because "it looked good but wasn't functioning properly.” Turns out I never had any problems with my gallbladder, and the surgery was unnecessary. I started vomiting nonstop but was discharged. They had no clue how to help me.

I'm sick - I don't have amnesia

I went to a second hospital in Cincinnati, where I actually worked as a personal care assistant! My pancreas indicated I was a heavy drinker. They asked me many times if I was sure, even after telling them I didn’t drink.

I was admitted and given promethazine for my vomiting and nausea, plus pain meds around the clock. They ran some tests.

My first time getting steroids

I also got asteroid, prednisone, but they never told me why. My vomiting slowed, but I was still nauseous. One of the physicians told me if I vomited again, they'd send me home with a feeding tube. I'd be disabled and wouldn't be able to work.

Feeding tube?! No way!

I was not about to let that happen. I only ate a few bites of saltine crackers and some water. The next morning, I told the doctor that I had not vomited. He had the nerve to ask if I was telling the truth!! Lol! Even if I was lying, there was no way I would accept a feeding tube.

After being discharged, my body slowly went back to normal. I remember thinking, "That was weird!"

Over the following 2 months, I weaned off of the prednisone.

NMO attack #2 with steroids

6 months later, nausea, vomiting, and body pains started again.

Still not knowing I had NMO, my mom remembered the steroid prednisone helped me feel better. Over the next couple of months, back on steroids, I went back to normal.

Losing my mobility at cosmetology school

I had about 5 months left of cosmetology school at the time. One day, I stood up and felt excruciating pain in my right hip. I was terrified to put weight on my leg. Worsening over the following week, my leg would give out and I'd fall. I was literally dragging my leg as I walked.

My teacher even gave me an old cane. Every morning I prayed to God that I wouldn’t feel pain when I got out of bed. Some days I had to crawl.

My friends thought I was being extra and dramatic, which I never am.

When will I get the help I need?

I finally went to my doctor, and they ordered an MRI.

At the end of June 2013, the office called me that evening and asked if I'd been on prednisone steroids. I had avascular necrosis and needed hip replacements. They'd never seen a 29yr old with AVN - unless they'd been on steroids.

I was so confused and mad. Why would they put me on steroids if it can cause AVN - and not warn me?

This was at the end of June 2013. I wasn't able to see an orthopedic doctor until October.

NMO attack #3: September 2013

I walked into the 3rd ER with severe back itching. They tried to send me home, but I put up a fight and was admitted. The next day I woke up paralyzed. The MRI showed spine inflammation.

Over these 6 weeks, I was in the ICU, receiving thousands of milligrams of steroids to suppress the inflammation (which worked).

Swelling from steroids

After getting out of the ICU, my face was so swollen. I had no idea steroids did that. After a while of prednisone, I gained so much weight.

Outpatient therapy helped me regain mobility and feeling, but my hip pain returned.

No hip replacement for me...yet

No doctor wanted to do a replacement because of my age and the steroids. They told me my hips would get infected and cause more issues, so I got injections and core decompressions.

In 2014 I had pain and swelling in my elbows. I got an MRI - I had avascular necrosis in both elbows.

Learning to stand

In 2015, I could stand with the help of leg braces. I noticed my left knee was hurting badly, and an MRI showed my tibia had deteriorated.

No orthopedic doctor had ever seen this happen. I got multiple opinions and got a bone graft. The soft bone from my hip was packed so new bone could form, which was very successful.

The road to my hip replacements, without steroids

I got stronger. The pain and both of my hips were getting worse, but I was getting stronger. Walking and standing were so difficult. I'd been off prednisone for a few years.

I started Soliris infusions in 2019. My neurologist okayed me to schedule hip replacements. He knew I was young and wanted to walk. So, I’m okay with this med!

The orthopedic who replaced my hip said I had so much arthritis and missing bone in my joint that he couldn’t understand how I could walk the little bit I could.

Feeling grateful for my journey

But I was so happy. If I had never been paralyzed, I would have been living in a wheelchair because of the AVN. My left hip was replaced in June 2021. Now, I'm more stable walking with my walker, and I'm working hard to gain strength to prayerfully never need my wheelchair.

4 days before I became paralyzed, my mom told me to ask my grandma to borrow her wheelchair to attend an event with her.

We had a mini argument. I didn’t want to use the chair, and I told her as long as I could walk, I'd take little breaks and sit when I could. I was just grateful that I could walk and push through the pain.

But 4 days later I was in a wheelchair and am now approaching year 10!

Prednisone saved my life but caused lots of other issues as well. It's a gift and a curse. I pray I never have to take it again.

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