I came across this article while reading the Drudge Report this morning. link It’s from The Telegraph in UK where doctors used a new treatment where they implanted stem cells into people with multiple sclerosis. In both case, the patients made a full recovery even after being confined to a wheelchair. Even though MS and NMO are technically two different diseases, it’s encouraging to know that modern medicine is making great strides in helping people live normal productive lives the same as they did before they became sick. Hopefully someday I’ll no longer have to have chemo every five months to prevent an attack of NMO.
In Sept of 2012 I was diagnosed with Neuromyelitis Optica aka Devic’s Disease, after losing sensations in my legs and spending a few days in the hospital. NMO is a autoimmune disease similar to Multiple Sclerosis, however NMO is a completely different condition that needs to be treated differently than MS. If NMO goes untreated, one can lose their vision and the loss of their legs.
I remember sitting in the hospital three years ago with my wife when the nurse came in to hand me a few pamphlets about NMO. One of the pamphlets was about living with blindness. Since I went blind in my left eye earlier in the year, the thought of it returning and taking my entire vision scared the hell out of me. At the time, I felt like my whole life was over with all of my hopes and dreams crushed. I thought I’d never be able to live a normal life and would end in a nursing home blind and in a wheel chair. I certainly didn’t need a nurse handing me a pamphlet about blindness to cheer me up. Fortunately, I had the love of my wife and family to keep my spirits up.
My wife and I left the hospital and decided to take it one day at a time. At times I think it was harder on her than it was on me. I never took time of work and continued to live my life as if I didn’t have a disease at all. I received proper treatment in the coming weeks with a dose of Rituxinab chemotherapy. Then every few months I would go to the hospital and sit in a bed while the IV was injecting the medicine into my body. It’s not any fun, but it beats the hell out of the alternative.
During the early days when I was dealing with my disease, I rarely read or googled stories about NMO because everything I read were horror stories from people who have been diagnosed with it. My wife would tell me how they were in chronic pain or unable to walk around. I already felt bad enough and didn’t need to become more depressed about my future so, I just kept living my life as best as I could.
So three years later, how am I doing? Actually, I’m doing great! I feel well, I haven’t had any real serious attack since my initial attack three years ago, and my vision in my left eye has come back to almost where it was before I even had an attack. In fact, last year when I went to get my driver’s license, I had to get my eyes checked during the exam. I closed my right eye and read the lines with my left eye to where the examiner didn’t see anything wrong with my vision. With contacts, I have 20-10 vision in my right eye and 20-30 with my left. I absolutely feel that my vision in my left eye continues to get better.
You may think that the silver lining of my disease is that I take better care of my health where I watch what I eat and exercise more. Well, I do try to do those things, but the real silver lining is my golf game. My golf game has dramatically improved even though I only play nine holes a week. Since my legs always feel tight, it helps me keep my body still in my swing making me hit the ball really straight. I have improved so much over the past few years, it has taken about 6-8 strokes off my handicap. In fact this year alone, I have scored numerous birdies, and four eagles with one of them being a hole in one.
This is the ball in the hole on the third hole of Stonelick Creek Golf Course in Batavia, OH in July of this year.
Here is a shot of me in total shock on the tee box after I just shot the hole in one. I hit my eight iron about 160 yards to the pin. The ball hit about six feet from the pin and dropped in the cup. At first I didn’t know what happened to the ball, then my brother Steve told me in went in the hole. I kept searching around the green to see if I could see a ball, but I couldn’t. It was then I realized the improbable. A few days later, I calculated how long it would take me to get another hole in one my life with as much golf as I play (nine holes a week for 22 weeks) and it will be another 212 years before I get my next hole in one.
Also over the past three years, I’ve been available to help my wife with her business repairing furniture she buys and going to antique shows together. In many ways it has made us closer as we appreciate each others company more and not take each other for granted. We go to numerous antique shows during the year with one of the biggest in Springfield, OH. It’s a huge show with 3000 dealers and we’ll end up walking around for almost eight hours during the day. Many times she poops out before I do.
I write this post for one reason. I want anyone who has recently been diagnosed with NMO that happens to come across this blog from a google search to know that everything will be alright. There will be challenges from time to time and you may have to fight with your insurance company to pay for the treatment, but as long as you find a qualified doctor who specialize in NMO, your chances of living a normal productive life is very good. In fact, the last time I saw my doctor in Columbus, OH, she told me that she firmly believes that there will be a cure for NMO someday soon. I certainly hope so, but I’m not going to wait for a cure for me to start living life again. I simply haven’t stopped.
I usually don’t like talking about my condition for two reasons. One, I don’t like thinking about it and two, I don’t want to jinx myself when I’ve been feeling really good lately. Well, I had a set back last week and figured I should at least discuss it. I have a rare disease called Devic’s. Devic’s Disease is an auto-immune disorder similar to Multiple Sclerosis but it mainly attacks the optic nerve in the eye and transverse myelitis in the spine making your legs feel numb. Without proper treatment, people can go blind and be paralysed in a wheel chair. It’s a very rare disease and finding any information on the internet from people who suffer through it can be tough to find, so often I feel like I’m the only one in the world battling this crap.
It started last Saturday morning when I woke up with some pain in my left eye. It was same eye where I had an attack last year and lost my vision. The pain went away in a couple of hours and I thought it was an odd occurrence but I was grateful that my vision hadn’t changed for the worse. Well, Sunday when I woke up I noticed that my vision had weakened. I couldn’t see as clearly as the day before and it was hard to read the words on the screen of my laptop.
My wife Anita and I did the right thing and went to Miami Valley Hospital in Dayton, OH where my new doctor is located. My old doctor at University of Cincinnati left her practice last May to work for a pharmaceutical company to help develop medicine for people with neurological diseases. With her gone, the closest doctor I could go to was Dr Jacobs in Dayton. Thankfully, my new doctor is as qualified for handling people with Devic’s Disease as my old one was.
When we arrived at the hospital, the doctors started having me do a bunch of neurological exams. They made me touch my nose with my finger then touch their finger with mine. They would ask me to continue to touch it back and forth from my nose to their finger as they moved it around. Then they wanted me to stand up and run my foot up and down my other chin on both legs. I passed all the tests but the fact that my vision had weakened, they were afraid that I was having a relapse. It has been seven months since I had my last treatment of Rituxan. Rituxan calms down my immune system and kills the CD-20 cells of my blood preventing an attack. Apparently, my CD-20’s are now elevated.
After a few hours, the doctors at the hospital hooked me up with 1000 mg of IV steroids. After the steroid drip, they released me from the hospital but I had to have a nurse come over in the morning to hook up another IV in my arm so I could continue to get the IV steroids at home for four more days. I finished with the IV a few days ago and now I’m on oral steroids for the next six weeks. My doctor called Anita and told her that he’s scheduling me to get more Rituxan for me Oct 14th. Today I feel okay. A little back pain but nothing too severe. Yesterday I was having a lot of fatigue so my doctor wanted me to drink a lot of Gatorade and eat as much potassium as I can for strength. If I do get worse over the next few days, I need to let me doctor know. Right now Dr Jacobs is out of the country at a medical conference yet, he cares enough about me that he took the time to call Anita and let her know what do to if I worsen. I am so thankful that I have a doctor who cares the way he does!
atypical optic neuritis, devic's disease, hospital, ms, multiple sclerosis, neuroligist, neurology, neuromyelitis optica, NMO, Optic Neuritis, transverse myletis, UC, uc health, university of cincinnati
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.
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.