AQP4 Negative and NMO IgG is Frustrating

Being an AQP4-negative NMO IgG patient can be so frustrating. I feel like an orphan patient with limited access to treatments because of my blood test results of negative AQP4. I often question myself, why even be diagnosed with NMO if it’s not 100 percent a sure thing, but then again, I’m not the expert to judge. It’s frustrating to know that there is a whole playing field of medications that may work for AQP4-negative patients like myself.

Feeling unheard with NMO

I recently had a hospital experience where I felt unheard, stuck, and like a lawyer. I’ve been having weird symptoms coming and going for months, and as stubborn as I am, I was ignoring them. I had a lot of work going on and could manage the symptoms on my own. I never followed up with my doctor but did email my neurologist explaining my symptoms and looking for confirmation that this might be temporary. I was experiencing increased spasms and tone in my lower limbs and left back side. I thought it could be the change in weather since I live in New England and the fall was starting. I seem to have some flare every time the fall season comes.

As time passed, I felt horrible until mid-September, when everything erupted. I started going to the emergency room almost every 2-3 weeks because my spasm was so violent. I was spasming to the point that I couldn’t walk or stand. I looked like I was a possessed person from a horrible creepy, scary movie. I couldn’t properly cook, dress, or shower. It was horrible, and I felt so dependent.

Relfecting on previous hospital visits with NMO

My first hospital admission was in September 2021; it was thought something was wrong with the baclofen pump. The baclofen pump is a surgical implantation of a device that delivers medicine into my spinal cord for immediate relief without having to deal with the side effects of taking pill medications, at least in my case. Tests and X-Rays were done on me to make sure the pump was properly working and it was. 

In my second hospital visit, my baclofen pump was checked again. Everything with the baclofen pump was fine, but I had a UTI. After 3 days, I was sent home with antibiotics to treat the UTI that was flaring me up to better help me with spams pain and control.

By my 4th hospital admission, my mental health was going down the drain. I had a flare due to an infection caused by bacteria in my body. For months this bacteria, Klebsiella, was causing infections in my body and also causing me to release.

Can anyone else relate to this frustrating experience with NMO? Have you ever been in and out of the hospital for the same complications? Leave a comment below to let others know.