Member has chosen to not make this information public.


Member not yet following any Groups.


Member not yet following any Pages.

Posts (1)

Oct 25, 2013 · Tumor on my right adrenal gland, possibly Cushings. Need info in Diabetes/Endocrine System

I am a 38 year old mother of four, I have Neurofibromatosis 1 and so does 2 of my children. My life has been racked with pain as far back as I can remember. As a young girl I would have debilitating migraines and spontaneous nose bleeds that lasted 1-2 hours. When I was 20 I was diagnosed with a Myxoma tumor that was in my sinus cavity and had to do a craniotomy to remove. When removed the pathology report said I was born with it, because it had 20 rings for every year it grew like a tree has. 9 years later a tumor came back in my sinuses but it was different it was a Malignant Peripheral Nerve Sheath Tumor. I ended up having to move to Stanford for 91/2 weeks of M-F pinpoint radiation and 2 doses of a chemotherapy called Cisplatin which during those 2 doses found out I was severely allergic to it and almost died due to renal failure I survived that and now 9 years after that ordeal I have a tumor on my right adrenal gland and it possible could be cushings I have already had the blood test which came back positive for Cortisol and I go back to the Dr. on the 28th of October 2013 to get the results of my 24 hr urine.. I need help I can not find accurate information on the web regarding this Disease and every sight I visit tells me something else. Please help me…