Living with Devic’s Disease

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!


7 thoughts on “Living with Devic’s Disease

  1. Cathy

    My husband was just diagnosed with this. We are feeling very much in a crisis and trying to navigate our treatment options. Thank you for writing this. Are there other resources you could recommend online where we could get helpful information?

    1. Go on Facebook and join The Guthy-Jackson Charitable Foundation group. There you will see tons of resources and a map of NMO doctors around the country.

      I’ve been meaning to post an update about my condition. It’s been almost three year since my diagnosis and I’m doing fine. Seems like everything you read on the internet is people telling you their horror stories. You may way to subscribe to my blog to get informed when I post. I’ll be doing it soon. Thanks

      1. Felicia Bryant

        thank you so much for posting this. I am newly diagnoses (or its a high suspeciion) have been reading horror stories and been really overwhelmed.

      2. Try not to Google about Devics disease. Most stories are old before tjey developed better treatment. I’ve been on Rituxan for five years now and I’m still doing fine. I believe they are getting close to a cure.

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