I had my appointment with the endocrinologist this afternoon and I finally kind of got some answers! He does not think it is related to my blood sugar, but I am testing it anyway over the weekend to rule it out. Basically when I am feeling awful I have to test my blood sugar and give him a call on Monday to let him know. He really thinks that it is something like a nonautoimmune disorder, basically related to my pulse and blood pressure being crazy (he thinks it might have been caused by my neck dissection). This is because my pulse when sitting up is 120 and when I lay down it is between 89-92. He didn't check what it would have been if I were standing because he assumed it would be insane. First we are going to rule out the blood sugar issues, or confirm it and then we'll go the other route with more tests for that as well if it isn't my blood sugar!! I checked my blood sugar when I got home from the doctor (I was feeling bad) was 88, so in the normal range. We'll see how it goes over the weekend. Thanks to everyone for your input and advice!!!!!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
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