My life changed on March 21st 2011 when this horrific disease attacked me. I had just come back from the west coast of Florida for Spring Break with my family when I noticed I was having some back pain. I had run on the beach everyday with my sister so I attributed it to that. I awoke that night with excruciating back pain and felt like my whole body was in a “”Charlie Horse”” My husband encouraged me to stand up but my legs felt weak and the pain was intolerable. I have had 2 children and I have never felt pain like this! After going to the bathroom, I attempted to get up and my feet where just dangling. My husband took me to the ER where they did an array of tests, MRI, blood, spinal tap etc. I was diagnosed with Transverse Myelitis TM and was assured that TM was usually a monophasic event. After being d/c from the hospital and having IV steroids and IVIG, I was transferred to input therapy for 21/2 weeks. Surrounded by the support of my family and friends, I walked out of the hospital with a walker after being completely paralyzed from the waist down 3 weeks earlier. I might note at this time that I am a type A personality, very active and played on a competitive travel tennis team. This disease was NOT going to stop me! After a few months, I progressed to a cane, was driving and going on with my new “”normal”” life. Three months later, my world came crashing down again. During a PT session I began to feel a back spasm again, although not as painful as the first one. Back to the hospital again and within hours I was paralyzed from the waist down again. How this was happening again was beyond me!!! Being transferred to the input therapy was a different story this time. I asked for limited visitation because I knew all my energy had to be focused on me getting stronger mentally and physically. I wanted to be alone and felt very deflated after being so strong for so long. I was a true believer in if you put in the work, you will get results… I DID do the hard work and had to start all over again! How was any of this fair??
I managed to make my way through therapy and was back on the walker again. This attack made me much weaker and knew I had a long way to go to get back to even the place I was. I was willing to accept this after awhile because I really had no choice. I remembered my vow that I would not let this disease beat me, I don’t like to lose. The part that I could not accept was that I was 1 in a million to get TM twice! I packed my bags and with my sister Kristi in tow (God bless her) went to John’s Hopkins to figure this out. I live in South Florida, so it was not and easy trip. Insurance would not cover this visit so we did our best to get there and get a second opinion. After going through all of my records, Dr Pardo thought it might be something vascular, so he recommended that I get a spinal angiogram. I went to University of Miami to get the angiogram and it was negative. I was disappointed because I felt if they found something in my spine, they could fix it…. no such luck! I was then referred to a neurologist at the University of Miami. After ordering the NMO-Igg antibody test, I was diagnosed with NMO, it was positive. According to my medical records, I had been tested for this earlier on in the year but it was negative. I was infused with Rituxan ASAP and have had 2 infusions thus far. I am told that I am fortunate to have been diagnosed so early and put on the treatment, this I am extremely thankful for. The total time from the first attack to getting Rituxan was 10 months and 2 attacks. I am progressing well, walking with a cane, driving, doing spin classes, pilates and anything else I can do to get stronger. I have a lot of good days and some not so good, but I know I will get better in my heart because I am so determined not to let it beat me…. My family and friends have been extremely supportive which has guided me through this illness. My husband , I can’t explain how wonderful he is, my rock and my number one fan… these are the things I am most thankful for!
My first episode attacked my conus and the second to my spinal roots , which I have read is rare in this disease (go figure). Ultimately my hips down were affected , and so far no real optic neuritis issues (although I have had a couple of scares). I am remaining positive that the infusions will work and I will have no more occurrences. I have quite a bit of weakness and numbness in my legs along with a drop foot in my left foot. I also have bladder and bowel issues but have learned to live with them.
I am so glad I finally had the courage to write my story on this website. It took a long time to get my confidence up and to be willing to open up about my journey to others as well as relive it myself. I hope it gives someone comfort and reassurance to know that someone else has been there too and is moving forward.
Jo-Anna Steele, Weston Fl