NMO/ Devic’s Disease

A few months ago I wrote about how I lost my vision through atypical optic neuritis and dodge a bullet being diagnosed with multiple sclerosis. Well the past couple of months haven’t been so lucky with me.

It happened eight weeks ago while in Lowe’s I noticed that my left foot was slightly tingling and numb. I blew it off at the time as an odd occurrence although back in my mind I was concerned. I woke up in the morning with excruciating back pain and asked my wife Anita to rub it. The back pain eventually went away but later in the day I noticed that my other foot was starting to go numb. I was still hopeful that it was nothing serious and even asked my older brother Steve if he’s ever had this happen to him. He said he did and that it was more likely just a pinched nerve and it would probably go away in a couple of weeks.

A few days go by and I noticed that my legs and feet were getting worse. The numbness went from my feet through my calves up to the knees while also having numbness in my groin area. It felt like I was sitting on a grapefruit when I sat down and I constantly felt pressure in the area. I knew then that this was no pinched nerve.

Concerned, Anita called my eye doctor to tell him what was going on. He told her to have me visit a neurologist so they could look at me. While at the neurologist, I explained my symptoms and the doctor felt I had transverse myelitis on my spine but would need a MRI to confirm. Transverse myelitis is the inflammation of the spinal cord brought on by environmental factors or a virus. It can be so severe that some people with the condition can not walk after an attack. Unfortunately when an attack does occur, it can take several months to a couple of years before the patient returns to normal.

After I got back from having the MRI, the doctor looked at the images and confirmed that it was transverse myelitis possibly brought on by MS. He told me that I have a mild case of it since I still can walk but it would eventually go away in a few months. He gave me the number of a neurologist who specializes in MS in case I wanted a second opinion. My wife called and made an appointment but the doctor couldn’t see me until Feb 2013. The doctor’s assistant told my wife that if my condition worsens that I should go to the University of Cincinnati Hospital emergency room.

A few days go by and I noticed that my numbness continued to climb up my legs into my thighs. Also my abdominal area was starting to feel numb as well. By this time, I was dealing with this issue for seven weeks with no signs of improvement. My wife Anita pleaded with me to go to the hospital but I wasn’t ready. I didn’t want to overreact and wasn’t too thrilled about going to the hospital anyway.

Then last Wednesday I decided to finally take care of my health and went to UC Hospital. When we get to the emergency room, the nurses and doctors asked me a ton of questions trying to diagnose my condition. They had me walking around on my tippy toes and then walk a line like a DUI suspect. Then they gave me a bunch of neurological tests like smiling and touching my nose to their finger as if I were a stroke patient. They decided they needed to do a bunch of tests on me so they sent me upstairs to be admitted.

While in the hospital, they drew tons of blood from my arm and gave me multiple MRI’s on my back and head. The doctors needed to determine if I had MS or NMO which is Neuromyelitist Optica also known as Devic’s Disease or some other abnormality. The worse part was they needed to do a spinal tap in order to make a conclusive diagnosis. The thought of having a needle stuck in my spine was unnerving. The MS doctor I was planning on seeing in February came to visit me in my room. She thought that I possibly had NMO but would need the results from the spinal tap in a couple of weeks to be sure. In the meantime, she wanted to schedule me an appointment within a week in her office and get me on a drug called Rituxan which should help me with my symptoms.

After three days in the hospital they pumped me with a 1000 mg of IV steroids a day to help alleviate my condition. I was released last Friday but still needed three more days of IV steroids at home. Earlier this week, I went to see the MS doctor. She checked over my condition to see if I worsened and reminded me that I’m extremely lucky that I still have strength in my legs and can still walk. Many of her patients visit her in a wheel chair.

Monday I start treatment of Rituxan which is a form of chemotherapy. I’ll have one treatment Monday and then another on the 22nd. The other day I had another MRI at UC’s imaging center to see if the inflammation has gone down.  I’ll have a follow-up MRI after my second treatment of Rituxan to see how the disease has progressed. By then the results from the spinal tap will be back which should tell what’s exactly wrong with me.

It’s been a trying few weeks but I know I am EXTREMELY lucky. One for not having severe case of transverse myelitis. Two for having a supporting wife and family who help me through this difficult time. And three for having health insurance. I don’t know what the final bill will be for all this but all I know is that if this would have had happened to me three years ago when I was unemployed, I’d be in financial ruin. All I know is you can’t take your life for granted because at any time it can be taken away from you.

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5 Replies to “NMO/ Devic’s Disease”

  1. Your furniture you make are beautiful I was lookin for anything new for devics diease I have it too and I’m not well and I came up with this web site Hope you feel better.

    1. Thanks! I’m doing well since I’m on Rituxin. I haven’t had an attack since October 2013 and that was minor. I just had chemo a couple of weeks ago so I should be good for six months. Do you follow the Guthy-Jackson NMO group on Facebook? There are so few of us we need to stick together.

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