I was 15 when I was diagnosed with MEN 2B. I was sick a lot from when I was 6 weeks old with double pneumonia, storage disease, spinal meningitis, ulcerative colitis.
I had seen geneticists my whole life, at one point I was called a “diagnostic dilemma.” I was at a follow up appointment with the geneticists when I turned my neck just right while the doctors were examining me, and they saw the lump in my throat. My calcitonin level was over 9000. After 2 surgeries to remove my thyroid, parathyroid and lymph nodes and 6 weeks of radiation, my calcitonin level went to 500. It has been 22 years and my calcitonin level is back up over 3000.
I live in northern Maine, and I am the only MEN 2B patient my endocrinologist has. I have been to Boston to Dana Farber Cancer Institute and Brigham and Women’s Hospital. I have had multiple procedures and blood work. A CT scan last December showed some very small spots on my lungs and in my neck but nothing to do surgery on, just “keep an eye on.”
No one else in my family has MEN; I have a mutated gene. I had my adrenal glands removed when I was 19. I had surgery on both of my ankles when I was 21 due to bone deformation. I have struggled with gastro-intestinal issues my whole life. I have a strong faith in God and a very supportive group of family and friends.
My husband and I have adopted two beautiful boys and are working on adopting their brother! Because of my medical experiences I went to college for social work and have been a hospice social worker for over 5 years.
I have not met anyone else with MEN so I was very excited to find out about AMENSupport.
I have all system of pheo