Yesterday was a rough day. I had a lot of increased weakness and proprioceptive issues with my left arm and hand. I think this may be the beginnings of Tysabri withdrawl or Tysabri Rebound Effect. Either way, it’s no fun to have MS symptoms returning and worsening. Thankfully, today my arm feels better, pain-wise, and is moving a little better as well. Hopefully it will stay that way. I’ll be calling my neuro tomorrow to get set up for my next IV steroid.
I saw another doctor yesterday who wanted to help me with my depression/anxiety, as well as neuropathic pain. So, I was given scripts for Cymbalta and Ambien. The Ambien is hopefully just going to be a temporary thing to help me retrain my body to go to sleep at a more appropriate hour at night. I need some good rest to try and give my body a fighting chance at trying to heal.
As of today, October 1st is still my stem cell infusion date. Which means in 11 days I will be getting my long-awaited infusion. Or will I?
Three days ago I had a terrible headache on the right side of my face, which turned out to be due to eye pain. My anxiety started about possibly having a relapse with optic neuritis. I then noticed slightly more blurry vision and was having increased spasms in my legs, which meant I was limping more. Not a good sign. I was hoping it was just temporary since I have recently been dealing with a bunch of stress – just a lot going on and me overdoing it at times. Shame on me! I know better, but what are you gonna do? I can’t just sit there and rest. Not my style at all.
Then yesterday I pretty much limped most of the day at home but got a ton done and noticed my eyesight had worsened by the evening. I decided to sleep on it and call my opthalmologist and neuro in the morning if things didn’t get better.
Well… I had to make the call.
And the study nurse said to come in ASAP for a possible relapse assessment, which is part of the stem cell study protocol. So after a urine test, blood work, vision testing and neuro testing, it looks like I am having a mild relapse currently. So, I had three choices:
1. Go on steroids right away, which would delay my infusion by 30 days after my last 60mg oral taper.
2. Wait to see what my urinalysis test said and blood work tests revealed, possibly needing to treat for an infection which may be causing my symptom exacerbation. And going on steroids tomorrow if I am worse and there is no sign of infection.
3. Do nothing, hope it gets better on it’s own and wait the 11 days to get my infusion.
I chose no steroids unless I get so bad in the next 11 days that it would be unfair to my body to not treat a bad relapse. Either way I would still get the stem cell infusion, however it would have to be delayed by a month if I went the steroid route.
So, we shall see…
Today I rested (as much as I could).
Oct 1st is my goal, so lets pray I wake up feeling better tomorrow.