I was supposed to start on Tys but found out today that I am JCV+. I feel this huge let down as I had finally made the decision to change meds (as the MD has been encouraging for the last year because I had new s/s and new lesions on my last few MRI's) and now am stuck in a waiting pattern until BG-12 makes it thru the FDA. In the meantime my MD says we can use pulse dose steroids to treat the symptoms. She is leaving the decision of steroids up to me. MD mentioned 1 day monthly or 3 days every 3 months. I don't know what to do.
Steroids make me feel bad, as many of you know, and make me blow up like an oompaloompa. As of now, my vision is ok, my balance is not far off-that comes and goes, I can walk. But my neck hurts all the time which gives me a headache and causes my eye to hurt. I have new numbness in my back and a new shooting pain in the back of my left foot/ankle that feels like a fire ant is stinging me every 20-30 seconds (this is totally a new one for me-anyone else ever have this--I am assuming its MS related).
I am trying to make an educated decision. I have 2 ways of thinking about this. 1. Take the steroids and help get down the areas that are inflamamed so that the body does not have to work so hard. 2. If I can still see, walk, talk-I just need to continue to suck it up and deal with the discomfort because there might come a time that I wont be able to see, walk and talk and then when I need the steroids they won't be effective-but is the state of my body being in a crisis mode for a prolonged period causing any damage?
ADVICE PLEASE!!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Steroids make me feel bad, as many of you know, and make me blow up like an oompaloompa. As of now, my vision is ok, my balance is not far off-that comes and goes, I can walk. But my neck hurts all the time which gives me a headache and causes my eye to hurt. I have new numbness in my back and a new shooting pain in the back of my left foot/ankle that feels like a fire ant is stinging me every 20-30 seconds (this is totally a new one for me-anyone else ever have this--I am assuming its MS related).
I am trying to make an educated decision. I have 2 ways of thinking about this. 1. Take the steroids and help get down the areas that are inflamamed so that the body does not have to work so hard. 2. If I can still see, walk, talk-I just need to continue to suck it up and deal with the discomfort because there might come a time that I wont be able to see, walk and talk and then when I need the steroids they won't be effective-but is the state of my body being in a crisis mode for a prolonged period causing any damage?
ADVICE PLEASE!!
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
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