Diagnosis: Neuromyelitis Optica Spectrum Disorder

Illinois, United States

How does one summarize living with TM for 26 ½ years? I’ll give it my best shot!

I was an active wife, mother, teacher, family member, and friend and my life quickly changed within a matter of days in 1993. My feet became numb and by the third day I was paralyzed from my chest down. The diagnosis was TM with T3-T4 demyelinated. Oral steroids and PT got me walking again by using a cane.

Moving forward in time, I had another attack and the diagnosis was changed to MS because the neurologist said that TM occurs only once. But none of the MS medications worked so I had numerous IV solumedrol treatments. They helped to get me walking again but with a walker. My symptoms of spasticity, spasms, girdle around my chest, pain, bladder and bowel problems were still present.

After so many IV solumedrol treatments, I became steroid dependent so I was put on mycophenolate mofetil to suppress my immune system and was weaned off steroids. I had no new attacks but by 2004, my symptoms were wearing me out so I retired from teaching. In 2005, the specialist I was seeing at the time suggested I stop mycophenolate because there was a chance of developing lymphoma and my attacks hadn’t recurred. I naively followed his advice because he was the expert.

Unfortunately, in 2008 I had my worst attack. I spent 33 days in the hospital, during which time I had plasmapheresis which helped my ability to move, intensive PT, and was put back on mycophenolate. I came home in a wheelchair and continued with PT. After seven months, I was trained to drive by using hand controls and that gave me the freedom to be out on my own and not be dependent upon others to get me places.

I went to a new neurologist whose name I saw in a SRNA newsletter listing the names of neurologists certified in treating TM. What a God send this was! He looked at the MRI that now showed my T3-T7 lesion and had me tested for NMOSD. The blood test result was positive for the antibody that makes me a high risk for another attack of TM, NMO, or both. He also told me that I’ll be on mycophenolate for the rest of my life and the risk of developing lymphoma is not that great. What a difference it makes to someone with a rare condition to have a doctor who actually knows about the condition and how to treat it!

I can deal with living with NMOSD because I have a wonderful support system of family and friends. I have a life and I’m living it to the fullest. My mantra now is to do whatever I want while I can. My glass is half full, not half empty!

Carol Carney