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.

Getting back in the shop

They say you should never take your life for granted and in the past few weeks I’ve learned that lesson well. It started a couple of weeks ago when I was having trouble seeing out of my left eye. It was cloudy at the bottom right of its vision field. At first, I thought it was a dirty contact but after I replaced the contact my vision didn’t improve at all. Concerned, I went to see my optometrist so she could check it out. She dilated my eye and took pictures of the inside and found nothing wrong. She told me to take some Advil for the pain and come back in a week.

A few days later, the pain increased and my vision decreased, so I went to the Cincinnati Eye Institute to have more tests done. The doctor examined my eye and conditions and told me that what I have is more likely Optical Neuritis or inflammation of the optic nerve to the brain. Nothing is wrong with the eye itself, just that the message from the eye is not reaching the brain. He told me to come back in the morning to take a vision field test to get a better diagnosis. I came back the next day, took the vision test and it confirmed that it was Optic Neuritis. The bad news was Optic Neuritis is often the initial episode a patient has who will subsequently develop Multiple Sclerosis later in life. He told me that I needed to have a MRI done to determine if there were any white-matter lesions on my brain. He also said that I need to see a Neuro-Opthalmologist in a few weeks to see if I regain any vision.

At this point my wife and I were freaking. I’m 38 and don’t go to the doctor because I rarely get sick. But the thought of developing MS during my life was not something I wanted to accept. I kept thinking about my life with MS and the limitations it would bring. Not being able to move my arm or the loss of my legs scared me to death. How was I going to work with wood? How would I ever keep my job as a sales rep having to travel around and build displays? What would eventually happen to me and how would my wife take care of me? It was a very stressful time for the both of us.

A few days later l stopped in and had my MRI done. They sat me down on the machine, strapped me in and put on a helmet on my head that made it feel like I was scuba diving. I laid inside the machine for 40 minutes as they took numerous pictures of my brain. The sound was horrible as it felt like I was in some strange space alien testing contraption. The only good part of the experience was they pumped in Sirius Satelite Radio; BB King’s Bluesville through some headphones. I listened to Albert King’s “Born on a Bad Sign” during the procedure and started to cry. I felt my life was coming apart at the seams and nothing would be the same again.

After the MRI, I waited for the doctor to call me back to inform me of the results. The doctor’s assistant called and told me that the MRI came back “abnormal” but wouldn’t clarify what that meant. My wife got on the phone and asked if the doctor would call us himself so he could clarify what the abnormalities were. A few hours later, the doctor called and said that they had found scattered white-matter lesions on my brain and with the symptom of Optic Neuritis, that it was likely that I would have the possibility of developing MS during my life. I asked if I need to be on steroids and if I did, why do I have to wait three more weeks to see the Neuro-Ophthalmologist? He said he’ll call the doctor and see if they can schedule me in sooner. The next day, the Neuro-Ophthamologist’s office called and scheduled an appointment the following morning.

So my wife and I got up and went to the doctor’s office first thing in the morning. By this time I’m devastated and not expecting any type of good news. My wife and I spent hours looking up symptoms of MS and Optic Neuritis on the internet over the past few days. The only symptom I had was vision loss, otherwise I felt fine. How could I have MS? I’ve never had any symptom of falling down, dizziness, numbness or tingling in my hands or legs my entire life.

The doctor came in the room and asked me how I was doing. He dilated my eye to get a better look at the optic nerve. He told me that my optic nerve was very inflamed and there was some hemorrhaging. He also told me that the white-matter lesions on MRI were old and not in the right spots to be causing my Optic Neuritis. Apparently white matter-lesions are common as you age and sometimes you can develop a white spot for every ten years of life. Considering I’m nearly 40 years old, that made sense. He said that what I have is Atypical Optic Neuritis (AON). This type has no association with developing MS. AON is sometimes brought on by an infection or virus. He asked me if I had a cat. I told him I did. He said sometimes people can develop cat scratch fever (even without being scratched by a cat) that can cause AON. He told me to go to the hospital and have some blood work done. There they will be able to determine why I developed AON however he cautioned, sometimes a person can develop it for no known reason. It just a fluke. I expect to get the results on Monday. If  the blood work confirms it is an infection, they will prescribe some antibiotics for me to take.

I was relieved that I wouldn’t develop MS during my life but I’m still concerned about my vision loss. When it started a couple of weeks ago, my vision kept getting worse over the course of a few days until I lost 95% of vision in my eye. Only in the last few days has the vision been getting any better, but I still have 90% vision loss. Optic Neuritis usually last 6-8 weeks in people then usually goes away. However, I have Atypical Optic Neuritis which may last just as long if not longer. Also, because I have AON, there’s a chance I may have some permanent vision loss once the swelling ceases. The doctor said that the majority of people with AON do regain all their vision but in some cases, some do not. He put me on steroids for the next month and I have to go back in a couple of weeks for a check up. Hopefully by then I’ll have the majority of my vision back.

This morning I went downstairs to my shop and started picking up some tools again. I stopped for a few weeks as I have been too afraid to work with only one good eye. I messed around drilling a new hole in my workbench for a placement of an overhead swing light. It wasn’t much, but it was the first step on the road to recovery both physically and emotionally.

I never really took my health for granted. Well maybe I did since I don’t have a primary care physician yet. But all I know is that I will never take my life for granted again. The things we do everyday just seem so mundane that we hardly ever think anything will change but when you have a health scare like I do, it wakes you up quick. Even though I’m not out of the woods yet being legally blind in one eye, I’m hopeful I’ll get better soon with good medicine and a lot of prayer.