Regarding JanaC's message about facial numbness, I've had facial numbness for about six years. I've been taking IVIG for more than 11 years. While the IVIG has helped my mobility and walking, it hasn't helped the facial numbness, which has gotten progressively worse. However, it isn't nearly as severe as described by JanaC.
Jon
/Did you have radiaiton for the breast cancer? When and how much? Thanks
uncomfortably numb said:
Hi
Ok, this is where I am now. It appears that the autonomics clinic in Chapel Hill is not active now, my heart Dr. said he was not sure when I was in there last month, so I got a call from the Mayo Clinic in Florida. He referred me there. I have not called them back yet. They left a message on my cell phone. I have to see what all my insurance will cover if I travel there to be assessed. I am pretty sure that they pay the hotel and food costs and my husband retired from an airline so we fly free. I just need to see what is what.
My spinal protien is 123, But I am complicated by the fact that I have a tumor or something growing in my brain stem in the mid brain area. It is very slow growing. But, it could be the cause of the pressure. My family Dr. feels that I have something that has not been diagnosed ever. A new disease. The tops of my feet began turning dark brown, and the sking became very thick and striated about seven years ago. No one could diagnose that. The guess were everything from HPV, another warty thing, a disease that is indicative of a tumor somewhere else, a cancer, and is fatal, to them telling me I wear ill fitting shoes. One Dr. told me that I scratch my feet in my sleep. Idiot, total idiot. It has since progressed to my knees. And, there are knots that have formed underneath the skin on the top of my right foot. I have been to Duke for this, all sorts of biopsies have been done. Nothing has been recognized. The skin now appears smooth with NO pattern in it.
Oh, and when I went to the Dr. two weeks ago, the neuro, he found a reflex in my left elbow, the first one that I have had anywhere in my body in five years! How about that! I have been able to wear heels too, and my boots. So, I am in remission or better or something. I have not had IVIG since early January, and no other treatments. BUt, I have the stupid ICD implant, and I have not been back to my oncologist, so I have to do that mess for the breast cancer and have to deal with my brain tumor thingy. I just want to get better all over.
Hi
No, I did not have to have radiation. My bilateral mastectomy was all the treatment that I needed. They did a sentinel node biopsy and I was clear in all the nodes, so I did not need any additional treatment. I celebrated my eighth yr. cancer free this past Feb 6.