During my apt Wednesday with my neurologist he mentioned starting me on IVIG infusions. He also referred me to a rheumatologist and I thought I had seen him first but I don't. He wants to get me going ASAP to get my insurance to accept it along with scheduling cause that can take a bit.
Im excited. The solumedrol 500mg infusions are starting to kick in on the 3rd day. I actually woke up in the least amount of pain than I have in a long time. I've only gotten mehtylprednisone once prior in March and other than that only Prednisone. The original methylprednisone helped me but the normal Prednisone never did with my normal pain. Today was my last day of it.
I'm not sure what that implies that mehtylprednisone helps my entire body pain but normal Prednisone doesn't but I'm sure it means something! Maybe it's simply the dosage. Because originally I got 125mg of methylprednisone and the Prednisone pills were only 40. This methylprednisone is 500mg. So maybe my body just requires a high dose to help it. It's definitely helping my lower spine and nerve pain in my legs thank God.
Anyway, I'm excited for the IVIG infusions. I hope they help. I also see a neuromuscular neurologist day before Thanksgiving, rheumo my neurologist referred me to on the 13th of December, and my PCP referred me to the university of Colorado for a rheumatologist. So I still am going to see a lot of people coming up but I hope that the IVIG does something.
Also, something that I find interesting with this mehtylprednisone is that I feel my body weight on my muscles. Idk if muscles have gone completely numb and I never noticed but yesterday when I woke up it's like I could actually feel my body weight on my legs and upper body. Previously I realized I felt weightless and it was super weird. Woke up again this morning and the same thing. Like it was hard to walk and I could feel my muscles contracting. I have a rubber tape thing my PT gave me for arm workouts and whenever I used that I could not feel any type of burn in my muscles. I felt nothing. Although, I still get a lot of muscular pain but everything is technically "nerve" pain. That could be due to some muscles not working so other muscles have to compensate so there's an imbalance from my EMG results.
So he has officially gave me a diagnoses of CIDP