k6ristin wrote:I everyone will say "oh how are you and be expecting this miraculous thing", when in fact i'm way worse and it'll take some re-explaining....they have an excuse, but my family does not.
I don't care if they are old, they know how to google, and i wish they'd stop calling everyday to see if i'm all better yet and ask ridiculous questions when i've told them a million times it's experimental, nobody knows!!! they don't even really know what MS is. (why are you so tired?) is it so hard for the family to do a little research? i would for them....
Kristin I feel like I could have written that myself. Are you sure you did not plagerize that from my mind?
Sorry to hear your 2nd went like it did. I believe you know that my first went ok with the exception of crazy rash until day 4 when my ON got worse. By the Saturday after the trial my ON was so bad that I was basically blind in my right eye. I got some steroids after a week. They wanted to watch me and see if it went away on its own first. The steroids helped a lot and I have been slowly recovering day by day. I am ~1 month post treatment and my vision is not quite back to baseline yet, but close. They did call my experience a relapse, not just an AE from the drug. I think the combination of a ton of stress at home and work and the drug itself put me in a tail spin and a relapse.
Now I seem to be feeling better at times that my prior baseline. I have less vertigo / dizzyness and my gait is better at times too. Maybe a phsycosomatic type effect, but I'll take it. I pray to continue to improve. I do not know if I'll go for round 2 yet. We will see. My platelets are low, borderline I guess and white blood cells low too. I hope those get back up quick. I do not want some drug addict's platelets that he sold to a center...YUCK.
I actually walked in the San Diego MS walk last weekend / 3 miles and it went pretty well. I only had a little vertigo at the 1/2 way mark and it went away with a little rest and I walked on.
I hope you feel better soon. Too bad family can be so clueless. Is it pure ignorance, or denial, or a little of each> I dunno...
One day I am going to start my Campath blog to chronicle my journey, but for now this post is a good start.
God Bless - Grumpy