Welcome to Kevin’s CaringBridge Site
Sign In to Show Your SupportHello all,
Well. I've made it over a year now. Don't think I plan to use this much anymore BUT I will now.
Overall, I'd say I'm happy I did the treatment. There have been some positives and negatives.
Positives:
- I think I mentioned it before, but I've noticed a rejuvenation, when I drink heavily. Before HSCT, I'd really start to see my disability increase as I drank. That doesn't seem to happen anymore, which is just nice to have more control over my body. I also rarely get hangovers.
- I was also not on a DMT (MS drug) for a year and didn't get worse, which is pretty incredible considering I'd get worse every 3-4 weeks years ago, before I started my MS drug Ocrevus.
Negatives:
- I already had spasticity (tightness) issues in my right side before treatment, but that jumped up from the treatment. That has made my disability worse. Things like walking is harder, b/c my right leg wants to stay stiff when I walk, rather than bend. I'm taking meds and have been receiving botox regularly in my arm/leg to help calm it down.
- In Jan, I started feeling a brand new symptom, that I hadn't ever felt before. When I overexert myself or overheat, I start feeling an itching feeling. Usually starts in my lower back and will travel up and to my neck. I have to stop the activity I'm doing and it calms down shortly after. I've been given a med I can take to help prevent it, but I try not to take it often. I'm honestly not totally sure why I'm experiencing this, so just monitoring for now.
I decided to get back on my MS drug Ocrevus. As a precaution, but also b/c it doesn't hurt to take. I don't get any negative side effects or anything on it. All of my cell counts are finally back up and am happy to have stopped taking antibiotics, which I had to take for a year. I'm still going to the gym 3 days a week and have felt pretty back to normal for a while now. I think that's pretty much it. Like always, feel free to reach ouut if you have any questions. Adding a picture of Summer and I in Cincinnati last weekend!
xoxo Kevin
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