My journey began in 1997 when I was just 17 years old but I didn’t know at that time. I had lost my vision in my left eye for about 5 days and I was given prednisone treatments to restore it. Over the years I did suffer with blurred vision at times but it would only last a few minutes so I never saw a doctor about it. In June of 2010 I woke up to get ready for work and I felt a burning sensation in my right buttock and that lasted for a couple of days. About a week later I began to feel extreme pain in my lower back and my legs began to feel heavy but I chalked it up to working in a factory for over 8 years. I was so out done because I had recently been promoted to department lead so I no longer worked on the production floor. I tolerated the pain for a month but decided it was time to talk with my primary physician. He diagnosed me with sciatica but we soon discovered the meds weren’t working so he referred me to a pain specialist. The pain specialist ordered many tests and mri’s but he couldn’t figure out exactly what was going on. It’s now August 2010 and my symptoms have progressed to full body spasms complimented with both legs burning which cause me to have to go on short term disability.
In September 2010 my pain specialist referred me to the neurology center to see if they could give me the diagnosis I so desired. A mri revealed I had inflammation on my spinal cord but not on my brain but my neurologist still believed it to be MS. After my spinal tap was normal I was then diagnosed with Transverse Myelitis. Not happy but definitely relieved to have a name to go with all the symptoms and I believed I was on my way to recovery. After months of different medications, IV treatments and physical treatment I was still deteriorating slowly. My neurologist decided to do another mri on my brain and spinal cord. It was discovered that the inflammation on my spinal cord had gone from 2 vertebras to 4 vertebras in length. He had to consult with the Mayo Clinic which advised him to do lab work and look for a IgG antibody. On December 1, 2010 I was diagnosed with Neuromyelitis Optica. My response was “Ok now what.”
I was in such bad shape when I finally got my diagnosis that I was hospitalized from Feb. 4, 2011 to March 4, 2011. I was in agonizing pain and was beginning to slip into depression. I could not walk, write, open anything, and bathe myself just to name a few. While there I had intensive physical and occupational therapy which allowed me to go home an independent woman once again. Unfortunately I only had 6 months to be on short term disability before I lost my job, which I did. Sucks don’t it.
It’s been a little over 3 years since I’ve been diagnosed and I have had a total of 3 really bad flare ups. The bad thing about that is that my flare ups keep me down for 1-3 months at a time mainly having intense spasms, extreme pain in the back of my neck, burning in my legs and numbness in my limbs. I have permanently lost some vision in my right eye but other than that I’m ok. My neurologists believe that I need to begin taking a drug called Cellcept so that I can be pain free for longer period of times. It’s a drug that will suppress my immune system so I’m nervous about taking it but I will be starting it soon.
I’ve had many days when I wanted to just give up and die but I thought about a song I’ve heard many times in my life. God will not put more on you than you can bear. I believe in God’s word and I know my life has purpose. With that being said…I’m Good!!!