Tag Archives: Symptoms

My Red Line

You think you’re out of the woods at least for a day, week, even an hour – and them WHAM the pain hits in your left leg down along the back of it making hard to walk and just plain uncomfortable to move.

I hate spasms! I especially despise the ones that hurt – a lot.

It sucks because I need to get things done but if I do too much, too fast without adequate rest as I go along, I reach my red line and something hits me – either loss of vision, weakness in my left leg and arm, dizziness, loss of balance or painful spasms. Ugh! It’s a guessing game to know how close I am to reaching my red line. It changes daily. Thankfully the issues resolve after a time of rest but that red line comes right back and becomes easier to hit after I’ve already reached it that day.

I need to sleep more. I need to go to bed at a decent hour and get more rest. But it’s hard because it takes so much to simply fall asleep. Insomnia and my mind running around makes me crazy! I need naps, but I don’t take them because I think I should be doing something productive. Plus it later ruins the plan to try to get to bed earlier. Arg! So frustrating!

Just needed to vent! Sorry…

6 Months Post Stem Cell Implantation

We are coming upon my six month post-stem cell infusion visit. My goodness, time has flown!

I continued having a lot of trouble with eyesight in my left eye since November and went through three 5 day IV infusions with no improvement in my eyesight 🙁  Thus, I chose to do something I never thought I would do and started on the medication Tysabri

In 5 days I will be having my 4th Tysabri infusion.

And amazingly my eyesight has gotten much better – not directly due to the Tysabri, but simply because my body has stopped my continuous relapse of Optic Neuritis, and I have gotten time to have my body slowly try to heal itself.

I have noticed that I feel better on the Tysabri but about 1 week before the infusion my body reminds me that I need my infusion.  In fact, today and for the past three days I have noticed some increased difficulty walking, increased spasms and increased fatigue.  It’s weird… I feel like I NEED my Tysabri to feel better.

5 days and counting…

My stem cells are still circulating in my body and still need time to do some healing. At least now they have a chance since my relapses have thankfully stopped for the time being.