One Year Update

I had my one-year MRI since starting my MS medication, Tecfidera, and it showed that I have new lesions and enlarging of existing lesions in my brain. All that means is my MS is progressing. And so, because of this, my neurologist said I need a “more aggressive treatment plan”. He gave me four booklets of treatment options for progressing MS. Three of the four are IV infusions and one, though is a pill, just came on the market in March 2019 and has the worse side effects of all the treatments. Before we decide which treatment to go with I need a blood panel done because certain existing conditions can be exacerbated with some of the meds. So, this has put a damper on things.

An interesting statistic my neurologist shared with me is, though statistically more Anglo women get MS, men with it seem to progress faster and more aggressively and Hispanic men even more so. I’m half Hispanic so it’s not surprising that my MS is progressing as it is then.

I had a suspicion I might be getting worse just on how I’ve been feeling- extreme fatigue, weakness in my legs and the worsening of my vision. I have optic neuritis in my right eye, but my entire vision is impacted. Even just writing this is difficult, I have a hard time seeing computer screens or small details. Funny story, when I saw my neurologist Monday, he did a vision test, had me cover one eye and asked me to read the letters on the wall. I couldn’t do it and I was moving closer and he had to pull me back because I was getting so close to the wall.

In addition, I had to step down from my job of 12 years in late March because I just couldn’t perform my duties. I was so sad that I had to and still suffer from depression from it, but I know it was for the best. If I was still working there today I would probably be putting myself in danger so it’s for the better. Though I really miss it; mostly the people that I considered family.

So that’s where I’m at. I have a litany of more tests to be done and more doctors to see but in all of this, I’m surviving. And though this is not where I’d imagine my life at 35, I do know and see Christ in my wife’s and my life. I look back to when I first got diagnosed and can see how everything was planned by God to help me today. And knowing that, no matter how awful I feel today I know Christ is with me and will be with us as we move forward. Thank you Christ Jesus.

If you follow this blog I apologize, I haven’t kept up with it. A lot has happened since my last post.

I’ve had many tests since my last post and some of the results are, I have vertigo (though not caused by MS it seems to be exacerbated by my MS) which explains why I’m dizzy a alot. I had a neuropsychology exam which concluded I scored above average where others with MS score below but I do have short term memory issues. Basically, I have to work extra hard to remember things. The worse though is I have optic neuritis in my right eye which explains why I’m half blind when I’ve exerted myself or mid-day comes around. My last MRI in November (2018) was a six-month checkup of starting Tecfidera and it showed a new, but inactive lesion in my brain. However, since it is inactive my neurologist wants to wait until my next MRI in May to see if nothing changes from then before deciding to change my medication. And lastly, I’ve had to step down/quit my job that I held for twelve years because I just couldn’t do it. My last day was March 28. That was the hardest of it all. So yeah, it has been a crazy last six months.

How I feel daily is tiredness and fatigue, dizziness and weakness and a rollercoaster of emotions. With my optic neuritis whenever I exert myself, even minimally I lose my sight. Even just showering causes vision issues. So looking for a job is hard. My wife Tracie is amazing and is now the primary breadwinner and all I can do is stay at home doing chores or help her in her law office as long as I can see. So that is my update.

I do hope to get back blogging regularly, I hope. So stay tuned, please.