In July of 2011 I had a migraine that caused me to lose vision in my left eye. That September my neurologist sent me to UVA and I was told I could have had a stroke. One month later I lost feeling in my left arm and hand. That December, 2 weeks before Christmas I lost feeling in my legs. After Solu-medrol infusions the feeling in my legs returned but the strength was decreased about 30% added with hyper reflexivity. I was given a spinal tap and a diagnosis of MS in January of 2013.
I was put on Copaxone ( a disease modification drug for MS) and continued on it for 6 months. During this 6 months I had 6 relapses that continued to steal more independence mobility and health. I was given 6 solu-medrol infusions, lost more strength and mobility in my arms and legs and also began to lose bowel and bladder function that I still have not regained to this day.
After failing another MS drug and yet another relapse I decided to enter a trial through Dr. Burt at Northwestern University in Chicago. While I was there Dr. Burt explained due to the lack of brain lesions and mismatched symptoms I did not have MS. But he did say he could still help me and ordered extensive back MRI’s and sent me to a neurologist in Chicago.It was there I learned I had Neuromyelitis Optican or NMO. It is also known as Devic’s Disease. I also learned my prognosis on average is 5 years. My first thought was Haylee. She will only be 8 years old. I can’t accept this.
Here is where I am today. I am on a 3 day solu-medrol infusion for the 7th time this year. I just started a Chemo drug, plus daily prednisone to try to kill my immune system and keep attacks at bay. I am under close supervision and because of my recent diagnosis I am still waiting on an official answer as to if I am still a candidate for a stem cell transplant. I am also in talks to visit the Mayo Clinic which is a leading researcher in Devic’s Disease and hope to find other places I can receive guidance and help.
There will still be benefits locally to raise money for a stem cell transplant. It may not be from Chicago but I will continue to find a place that will accept me. I will also be using the money to cover increasing medical costs for travel, tests and labs. Thank you so much for the love and support. Most importantly are your prayers for my family, and my Haylee.
http://www.caringbridge.org/visit/lesleepannell for in depth details about treatment, diagnosis, and the journey to my transplant.