Welcome to MS Hell
It all started with the vision in my left eye getting blurry. Old story I know. But I didn't pay a lot of attention to it because it wasn't too bad. Just thought it was whatever and would clear up by the end of the day so I didn't think about it anymore. A few days later, I mentioned to my wife, Gina, that my vision was getting blurry. When I told her it had been getting worse for the past few days, she was not happy to say the least.
My vision was completely gone in my left eye
Off we go to the ophthalmologist. She looks at it and says I have some inflammation and gives me steroids. The next day I woke up and my vision was completely gone in my left eye. Called the ophthalmologist's office and we were early so we got her service. She called back in about 5 minutes and told us to be at her office when they opened at 9 a.m. We were sitting there waiting on her when she showed up. In fact, we were the first people there that morning.
I had optic neuritis
She took me straight back to the exam room and spent a good 10 minutes just looking at my eyes, comparing the left and right. After she was done, she explained that I had optic neuritis. She asked if I ever had taken a hit to the eye or had anything happen to it. I told her that I had been in a few car accidents, only one was I driving, and had played sports in high school. She said ok, it can be an old injury coming back to haunt me or it could be multiple sclerosis.
To be completely honest I knew what MS was. I had an aunt by marriage that had it. I did not hear a lot after she said that. She said that she would set up an appointment with a neurologist and call me.
I was living in a pretty small town in Virginia at the time. The neuro that she could get me in to see on such short notice was a jackass but that is another story.
Appointment with an MS specialist
A couple of years later, Gina got a job at another newspaper so we moved to the Waynesboro, Virginia area. That turned out to be a great move for me. We were close to the University of Virginia. I had been researching neuros and found one at UVA Fontaine Research Park. This was almost exactly two years after the visit with the ophthalmologist. There was a doctor there that was an MS specialist by the name of Virginia Simnad. I made the appointment and had everything I could sent to her.
When the day of the appointment arrived we were sitting in the room waiting for her to come in. She walked in and asked what she could do for us. I told her that my last neuro refused to give a diagnosis so I needed one. She looked me straight in the eyes and said "You have MS."
A relief to receive an MS diagnosis
By this time it was a relief to hear. I finally had a name for what was happening to me. This was in July of 2005. For those that have had MS for a while you will understand this. She gave me pamphlets for all of the CRABs. That is Copaxone, Rebif, Avonex, Betaseron. Those were the only medications that were available at the time, if memory serves correctly.
Settled on Avonex
So Gina and I discussed everything and settled on Avonex, which I would only be on for a couple of years.
So that was the beginning of a very long, winding, tiring, frustrating and, at times, scary road. I remember in the beginning, for about the first six months or so, that if something happened the first thought that entered my mind was, "Is that MS?" If I stubbed my toe that was my first thought.
Keep moving forward
Then I made a conscious decision that it did not matter. No matter what, I was going to get up the next day and go to work, I was going to keep putting one foot in front of the other, and I was going to keep moving forward.
I have tried to do that to this day. Even though it takes a lot more work to move the feet now. When I received my dx I was 37 years old. Now, I am 52. I was forced to go on SSDI when I was 43. I am still married to Gina. This June 12 will be 21 years.
On Tecfidera now
I have gotten rid of the needles that I used to be on when I was on the Avonex, and then Copaxone, and am on Tecfidera now.
So instead of sitting around doing housework, when I can, and taking care of the kids -- read that last part as our doggie Dougie and our kitty Smokey -- I decided that I needed something to do that could work the brain instead of just watching TV all of the time. So I have started a web site called Jim&MS. It is at JimAndMS.com and I only have a few things that I have written up there right now but I want it to be a resource for everyone that has any kind of interest in MS.
Learning everything I can about MS
It has been a goal of mine to learn everything I could about MS and I want to share that information with the world. It is my way of doing a couple things. First, it really helps keep the brain active. Second, it allows me to give back to the community that has helped me so much.
So I am looking forward to visiting here and meeting everyone. I am sorry that this turned out so long, but I wanted everyone to have an idea about where I am coming from and my approach to life and everything else.
Do you celebrate your MS Anniversary?