My Personal NMO Journey
Last updated: April 2022
My story starts back in July of 2018. I was working at the local hospital as a Patient Advocate (loved my job). I started with a “pulled muscle” type of pain in my left shoulder area. I was too busy to go to the doctor. So I went for a massage, that didn’t help. I went to see a chiropractor and she wanted $1500 up front to treat me, my hubby said no way, we are going to the doctor. My doctor, After telling him that my fingers are now tingly and numb sent me for an immediate MRI. I still wondered why an MRI when I just had a pulled muscle, but I had done nothing to pull the muscle. After the MRI we were in the car driving home and the doctor called and told me to go back to the hospital for an MRI with contrast.
How the journey really started
I did that, and we waited in the ER patiently for the doctor to come talk to me. He told us there was a tumor at the base of my neck on my spine and they needed to admit me. My goodness. That’s where my journey really started. I was so afraid. The next 10 days really became a blur. They had a Neurologist Surgeon specialist visiting from another hospital and he started high doses of steroids and some other meds I am unsure of. I have now lost the ability to use my left leg and arm completely.
Surgery and uncertainty
They wanted to do surgery but told my husband that the outcome of surgery could be bad. Either I’d end up on a vent, I could die or i’d be paralyzed. That there was a 15% chance I’d be “normal”. I told my husband I wanted to see my whole family before surgery. Within 36 hours everyone was by my bed. Rallying around, praying, crying and very fearful of the future. The night before surgery they took me for another MRI. Surgery morning is here. There are lots of hugs and tears and I looked at my husband of then 31 years and could only cry, so afraid of what he would have to endure. I woke up in the recovery room and asked the nurse how things went. She said that the doctor. Aborted the surgery but she had no details. It took 45 minutes till she got me back to my room.
Prayers, miracles and a diagnosis
My hubby had just talked to the doctor. And he was crying. My tumor had shrunk so much with steroids (power of prayer as well) and they were not going to do surgery, nothing to operate on now. So … we still have no diagnosis. There is speculation of three possible things it could be but still waiting on the spinal tap for confirmation. In the meantime time they have sent me to rehab to try to get my leg and arm working again. My hubby looked for a neurology specialist since that was not this hospitals strong suit, and he got me an appointment at UAMS and we left rehab and went to Little Rock and started the diagnosis process again. It took another 10 days and lots of tests and they finally came up with NMO. They sent me for APheresis and started me right away on Rotux treatments.
Treatments for life
I had APheresis (Plasma Exchange) I think 10 times and two Rotux treatments before I left the hospital. I’ve been in treatment since. Every 6 months for maintenance. My tumor is just a shadow and I’m doing a great job of maneuvering my life. The pain I have in my left side at times is unbearable. I have no feeling from the top of my ear down to my fingertips. The left side of my neck is very sensitive with extreme pain with wind or the slightest touch. I have resumed normal activity in that I can sew, cook, do all of the daily chores that women do and I function well.
Support systems matter!
I can still drive and go to the grocery store, but I tire easily. They have put me on a slew of pain meds, but all of them gave me side effects, so the only thing that seems to work well is tramadol and Tylenol. Each year they have done an MRI and the tumor still remains just a shadow, and for this I am grateful. I’m extremely sensitive to heat and cold but I find that I just have to push through. My husband has been a huge source of strength and I could not have made it this far without him or his strength. He does anything I need (like fasten my bra and my shoes) and has to help me dry after a shower. NMO has changed his life as well. I am happy I found this group, I have yet to find another NMO buddy to talk with, but I’m hopeful the more we learn and find out about this we can be a support to each other. Thank you for listening.
Help others feel a little less alone
Typically, how much time passes between attacks for you?