MY NMO JOURNEY
I was once a woman who felt she could tackle anything that came her way. I lost my husband 13 years ago and had to go out and find new employment. He was a Pastor and I ran our Christian school. After being 30 years out of the work force it was quite an adaption, but I knew God was with me and would lead me along the way. I found a job that a dearly love working for different doctors everyday. It is always interesting and I have learned a lot.
It was February 2010, I started having severe back pain to the point that I had to stand in the shower all night with hot water to get any relief. That went on until after two days I couldn’t stand it anymore and I made an appointment with my doctor. She gave me a pain shot and some medication that seemed to help. The next day I found my left leg was weak and I couldn’t walk without a cane. She immediately ordered some MRI’s and sent me to Baptist hospital emergency room. After seeing about 5 different doctors they ordered more MRI’s and they still could not tell me what I had. I took 5 IV steroid treatments and they sent me to physical therapy and I recovered quickly. They dismissed me without a diagnosis. It could be Adem’s, Devic’s, Multiple Sclerosis, or Transverse Myelitis. Either of these are auto-immune diseases, as are Type I Diabetics, Celiac, Crohn’s, Gillian-Barre Syndrome, Myasthenia Gravis, Psoriasis, even Rheumatoid Arthritis. I knew it wasn’t MS, but didn’t know about the other things mentioned, so we started out with investigating all the others. We continued our investigation as I went back to work with weakness in my left leg. All the time, I was thinking this was a one time thing and I would go on with my life as normally as possible.
The second attack hit with a vengeance and left me paralyzed from the chest down. I was taken to the hospital and given steroids again for two days before my neurologist came into the room and said he wanted me to see a collogue of his in Dallas, Dr. Greenberg. The amazing thing was that my daughter had been researching on the internet and had come across Dr. Benjamin Greenberg’s name the night before. They loaded me (literally) in the car and drove me immediately to Dallas. We didn’t think about how we were going to get me in and out of the car to his office and then back in the car to the hospital in Dallas. We manage only by the help of some of the valet people that were there.
I literally had no feeling from the chest down, no bladder or bowel movement, no ability to move anything from the chest down. They continued my steroid treatment and added plasmapherisis treatments. I was able to move toes on my right foot and they started physical therapy. I was encapsulated in a machine that forces you to stand and my blood pressure would drop and they would have to remove me. They worked with me using a sliding board and a wheelchair. After further discussion about my case they chose to do another round of plasmapherisis treatments and by the end of three I was moving both legs. They gave me four more treatments and worked with me and my huge success was walking to the door of my room with a walker. My legs had turned to Jell-O after being in bed for two months. My daughters would take turns coming to check on me during the weekend.
My journey has been long and hard that I can’t deny, but I am still determined to gain as much back as I can until they find a cure. Many are worse than me, some have lost the ability to walk, or have lost their eyesight, or both. Something must be done to stop this debilitating disease. Everyday we live in fear thinking when the next attack will start again, as each one robs us of another ability and nothing can stop it from doing this.
This has not only affected my family, my work, and my friends. I no longer have the freedom to go on trips or vacations that require a lot of walking. I no longer can climb a ladder to change a light bulb. Things that I used to do can be done no longer.
This disease doesn’t just affect people my age, but children as well. We must do something. I would not want anyone to go on this NMO Journey, but now that I am here I must get the word out to others.
Many times it is mis-diagnosed as MS and this is NOT MS! MS does not strike rapidly. It is a slow process. NMO can happen in a matter of days. The sooner you get the correct treatment the more you will regain. If you have a loved one that has had rapid onset of paralysis, and/or blindness get them immediately tested with the IgG test. It took them about two weeks in Dallas to get the results.
I am back at work with a cane and have at times severe tightening of the chest and back area to the point of a pain level close to 9. We call this “banding”. My journey with NMO is not over, but I am hoping that a cure will be found soon. Research is being done through the Guthy-Jackson Foundation and UT Southwestern in Dallas by Dr. Greenberg. Please consider sharing my story and supporting this work. People of all ages are being affected by this disease and only through your help and support will we find a cure.