Reply To: Autonomic involvement

May 25, 2012 at 6:44 pm

bny–sorry to hear you are sick 🙁 I do not have autonomic involvement myself. It makes sense that if you have tested positive for autonomic involvement that it would get worse if you get sick. Do you think maybe an extra ivig infusion when you get sick since it seems to work good for you? what about adding some prednisone to your ivig schedule to see if it will help?
I know what you mean about the missing something—even my dr keeps telling me “I feel like we are missing something” mainly due to my “atypical” cidp diagnosis. An entire week at Mayo and every cidp test available turned nothing else up, now all these head to toe cancer screenings they are putting me through. Then she considered sending me to Brigham in MA for a third opinion!! I finally said –enough–lets just work on treatment plans for what we do know…..which is how we got to the rituxin point.
So i dont know—you could go someplace like mayo or one of the centers of excellence for cidp, but in the end, if the ivig is working for you, it has the least longterm side effects–would they really change your treatment plan? On the other hand if you do not feel you are receiving a good treatment plan–you can get all of your testing in a week and a second opinion from one of these places. hope you are feeling better. Lori