Reply To: Prickly/water droplet sensations

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!