Hi everyone,
@Justin30,
@Gingergrrl, thank you so much for thinking about me. I did reply to a convo with Ginger yesterday.
@Pyr2 I got your PM and thank you for the detailed update and I am going to reply there vs. here so you don't have to read everything twice!
I hope you are doing well..... so sorry this was such a debbie downer.
Absolutely not a Debbie Downer and this is the reality of what you are dealing with and we would not want you to have to censor it. I relate to a lot of what you have gone through although many of our specific symptoms are different.
So it seems reasonable to me to get another perspective from a good oncologist. Plus oncologists are some of the nicest clinicians to work with.
good luck to you, I'm hoping you find the right answer!
I totally agree and if I had not found my Neuro (who was the 3rd one after seeing two horrible ones back to back) we had already contacted City of Hope (cancer center) b/c they deal with paraneoplastic syndromes. I did not yet know about the autoimmune neurology lab at UPenn which is now one of my back up plans should my local treatment fall apart.
Also the infusion center where I am getting IVIG is a cancer center (who happens to do a lot of IVIG in addition to chemo) and they are the nicest nurses and staff to deal with and very attentive/supportive.
@anciendaze I am planning on reading The Girl From The Sixth Floor. I have a close relative who may have gone through this. She now has peripheral neurapathy but I'm not sure if this was caused by paraneoplastic or chemotherapy.
It is a great book and it normally takes me forever to read a book b/c I am so busy with other things but I read this one very quickly and was so invested in learning the outcome for Jenny (the girl with the NMDA encephalitis). You will enjoy the book. I learned from it that regardless which autoantibody, the treatments are IVIG, RTX, etc, and it confirmed I was on the right path.
