In 2006 I was diagnosed with Devic's disease. It's very similar to multiple sclerosis except scarring occurs mostly along the spinal cord, and brain involvement is very minimal. During an excacerbation, there's usually tranverse myelitis (extensive spinal cord inflammation) and optic neuritis (squeezing of the optic nerve causing loss of vision). The treatment of choice each time I have a flare up is Solu-Medrol, a corticosteroid given IV in the hospital. I receive large doses, most times for about a week or so, and then I taper off the steroids over a span of a few weeks.
In the past few years, I've had quite a few relapses. I was hospitalized just last month because of hip and shoulder pain, a new symptom I'm having. When MRIs were done, I was told I now have avascular necrosis of both hips, as well as my shoulder. One main risk factor of avascular necrosis, all new to me at the time by the way, is steroid use (long term/large doses such as those given to patients with any inflammatory condition such as arthritis, Devic's, and lupus).
When I got the news, I was also told I'd need hip replacements before the age of 35. I'm now 29.
This, in a nut shell, is my story. I'm new to this site, but so far I've read a lot about a lot of different scenarios and I feel blessed to be able to write about what I'm going through.
I'm now seeking a second opinion from another orthepeadist. I share my story because I hope that another woman feeling alone, or feeling she is the only one in this situation, or a situation like mine, will realize that she isn't.
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.