Many times, I go on these lovely breaks. Usually because life is either busy, or I’m too tired to do more than my day-to-day stuff. I’m awake late tonight because I am on my third day of prednisone taper following my 3 day steroid IV Tues-Thurs.
Steroids have always been good to me and have managed my MS relapses well. I was quite busy today (and somewhat productive) and am still not sleepy, thanks to the lovely steroids.
I need to blog to keep track of this next journey in my life – The one where I figure out what I will be doing next to manage my disease. It’s not an easy decision, but it is one that needs to be faced soon. I was on a very heavy MS drug for 3.5 years, and I still ended up with active lesions on my brain. Booooo.
Hopefully, I’ll blog with more pictures and happy times at home. Summer is upon us. We have an amazing backyard coming together nicely. I am very hopeful that we will have good times this summer!
I am so bummed. My eyes were starting to bother me right before my second CCSVI procedure. I could tell that I was losing my eyesight (in both eyes!) and was hopeful that I would feel better after my procedure.
I can only half see – just enough to type slowly on the computer. I’m not sure if this is Optic neuritis in both eyes? Or if it is an occipital lobe lesion.
Today is day three of my IV Solumedrol. I’m starting to retain water which makes my eyes swell up and feel worse. Good grief. I think I may have go on MS meds again. 🙁
Calling NY tomorrow to see about my possible need for a vascular tune-up. I am a ball of nerves – I hope I can sleep tonight!
I have had return of some of my symptoms which affect my eyes, my fatigue, and my leg strength. Hoping to get those back in check following round two.
I just finished a 3 day 1000mg IV on Wed, Thurs, Friday. Now I am on an oral 60,40,20 taper for two weeks. I finally started feeling a bit better today.
I am in a wait and see kind of mode right now, since things have gotten slightly better since the steroids. I’m still bummed out, but know that there’s always hope since a second CCSVI treatment may be a possibility later.