Monday, July 20, 2009

Just anothe MS day

I haven't blogged in a few days, because once again MS has raised it's ugly head. My near vision has really gotten worse which makes typing very difficult. My fatigue level is incredible. TWF( Train Wreck Fatigue) is back and I haven't experienced it in awhile. I had forgotten how quickly you go from being wide awake to fighting to keep your eyes open. I can't tell you how many times in the past week my husband has found me sound asleep, fingers on my keyboard as I attempted to blog.

On the good news front I FINALLY have my appointment at UCLA. Hopefully, I will meet all the criteria for the Touch Program and be able to start on the Tysabri. I won't see my neurologist again until after UCLA. I'm still on steroids. Looks like I will be for another 6 months, unless UCLA takes me off. If I stay on for the entire 6 weeks it will mean that I have spent a total of four and a half months straight on steroids. Good golly. I feel so bloated and my face is so round. It will take forever to get the weight off. Oh well, maybe I'm just destined to be a "cuddly" grandma!


Herrad said...

Hi OKimbuerly,

Hope you hear you can start using the Tysabri soon and it will make a difference for you.

Sending you lots of good thoughts.


Living Day to Day with Multiple Sclerosis said...

I am so glad that you meet the criteria for the Tysabri. Hopefully you will be able to get off the steroids. I am sorry to hear that your MS is acting up again and causing your vision to be bad. I think that is one of the worst symptoms. So here's hoping that it gets under control quickly!!!