Reply To: Prickly/water droplet sensations

May 18, 2012 at 1:37 am

Thank yall so much for your replies!!! It’s always good to have other people to relate to so that (as you mentioned dmcheney)I don’t feel quite as crazy!!! 🙂 I can always tell when the sun is shining through the window onto my extremities since I feel those wierd senstions intensify!!
No problem Lori!!! I sure wish they had private messaging on this thing- Good luck with your rituxin!! When do you start??? Did you get any improvement with the IVIG?? I am now having my IVIG every two weeks ( I knew for a long time I should be doing that as I felt it wearing off before that 3 week mark… and then I got a cold from my kids and went pretty numb on my right foot and hands- it was like someone had injected me with lidocaine, it was crazy)!! When my sleeves or pants/shoes rubbed up against my skin it made it all more numb (so odd!!!)!!

I had my follow up with my neuro today, and I sware, I am SUCH a nervous wreck every single time.. I fear that this is the time they are going to discover I have something really really bad (I really think I have PTSD from my frist dr’s appointment when they said it might be ALS).. Anyhow it went great (my reflexes have continued to diminish on my upper extremities – they could barely get any response, and my right -most affected leg is still decreased- it’s normal now- I have alwyas had brisk reflexes all my life).. Gotta say when they tell me my reflexes are diminished I feel better about this all!!! But, anyhow it was all in all a good appointment. they are changing me to gammunex from carimmune since I develop a rash from the carimmune.. not that it’s a big deal, but it will be nice if i dont itch!) Keep me updated!