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Wednesday, April 26, 2017
My mother was diagnosed with Von Hippel Lindau disease and had both her adrenal glands removed because of pheochromocytoma, and a whipple procedure because of an islet cell tumor. Her problems began around age 30. I am 27 and recently have been experiencing unjust and prolonged anger, excessive weakness, and waking up between 3 and 4 AM with palpatations, dizziness, and sweating. In the past 4 months I have had increased gas pain, diahrea AND constipation, weight fluctuation (down to 78lbs at one point), and a recurring stabbing pain in my left side that lasts up to 10 minutes and can be so severe that I can barely breath and lose my vision. I have a 50/50 chance of inheriting VHL and my symptoms scare me. Is it possible they are linked to pheochromocytoma and pancreatic cancer?
There is 50% chance of inheriting an expressive VHL syndrome. The etiology of the symptoms you describe does include islet cell tumor or pheochromocytoma. The symptoms as described are severe and I would recommend immediate consultation with a physician for serum and urine labs and imaging studies.
Please contact my office if I can be of assistance.
Amit D Tevar, MD
Assistant Professor of Surgery
College of Medicine
University of Cincinnati