I was born in July 1949, on a hot July night, at 11:42 pm. The Doctor that delivered me had to be called out of the rodeo that night. I guess that I should like horses, but I don't. My Mother had MEN 2B, which was unknown at the time. The first time that I cried, she saw the bumps on my tongue and knew that I had inherited the syndrome from her. She had hoped that I would not, because my brother, born six years earlier, had not had any problems at all. Soon after birth, I developed an extremely bad case of eczema, all over my body and face. In 1949, the doctors had little knowledge of this disease and tried everything imaginable. My parents, who were not well off, spent literally all of their money on supposed cures. Nothing worked. For some unknown reason, when I was about three years old, the eczema cleared up on it's own.
From the time that I was about four until I was about thirteen, I led a fairly normal childhood, except for numerous allergies, severe asthma, and some problems with eczema in small spots, and getting constant teasing about the bumps on my tongue. I was accused of eating frogs, lying, and anything else that came into the minds of the other children.
Teasing was unmerciful. My physical make up at that time was very tall, skinny, with large lips, and a very thin face. My brother loved to call me "Horseface" because of having a very thin face. That was just a part of growing up.
At about age fourteen, (puberty) my eczema returned with a vengeance. I even had the rash in my hair. My small town MD, after trying everything, even extremely large doses of cortizone, referred me to Dr. Mc Elhenney in Austin, Texas.
Dr. Mc Elhenney got my eczema under control, with a combination of cortizone, and allergen injections. I used loads of pure cortisone cream, which carried a warning of not to use on face or near eyes. Since the rash was everywhere, I used it all over, not thinking about long term effects, just immediate results, which proved to be a bad mistake in later years. The rash never completely cleared up, as I still have trouble now.
Except for the eczema, I led a fairly normal life until about 1970, when I began to have what I called "weak spells". When these came on, I would sweat heavily, feel like I had no energy, get very pale, and feel that I was unable to think clearly. The doctors that I saw could not find anything, so they called it anxiety attacks. Since I had always been a nervous person, this seemed possible. This went on through one marriage, and into another. I was able to struggle through these episodes, and no diagnosis was conclusive. I did find out that I was sterile eight years into second marriage, so at least the genetic mutation of men2b stops with me. We adopted a newborn little girl in 1981, and she has been the light of my life.
While seeing my opthomologist in 1991, my eye pressure for glaucoma check was fluctuating wildly. Part of the problem was that I was still using strong cortisone cream, even on my face. This way the cortisone gets into your optic area and affects eye pressure. He had seen numerous abnormalities in my eyes, including numerous (too many) blood vessels in my eyes, enlarged corneal nerves and a beginning cataract. In his practice, there had been no one else with same problems. He began to do research and said that it could be MEN2B, or multiple endocrine neoplasia type 2b. I began to have spiking blood pressure to 200/180 and severe headaches. About the same time, I developed diverticulitis, and went to hospital for treatment. While there, b/p was going haywire, and a CT Scan was done. It showed a large mass on left adrenal gland (pheochromocytoma).
Since no surgeries had been done at this hospital, I decided to go to Temple Scott and White. There a complete workup was done, and it was discovered that I also had enlarged thyroid. Needle biopsy was done and came back malignant. After counsel with the doctor, I decided to have the left pheochromocytoma, thyroids, and section of colon removed (because of diverticulitis). Surgery was eight and one half hours long. Calcitonin levels dropped to normal range after surgery. I went back every six months for recheck. Prognosis was good at this point, even though thyroid cancer was medullary type, faster growing than some others. I had had a physical in 1985, and had enlarged thyroid then, but having no insurance kept me away from hospitals. Little did I know that the delay may have cost me some precious years later in my life.
In 1998, I went to endocrinologist/oncologist for hormone problems. After blood work, my calcitonin levels were found to be elevated to 68, which less than 10 is normal. Hormones took a back seat to cancer, which I am focused on now. I had all blood work, Sestamibi scan, Octreotide scan, CT scan, 2 ultrasounds of neck and head, numerous x-rays, and all tests imaginable done, with no concrete conclusions. No tumor or cancer was found.All I was told was come back in ninety days to re-test. My calcitonin level has increased to over one hundred.There seems to be no pheo, either, as the 24 hr. urine test was done.Waiting is the hardest part!
In 1996, I had a lens implant done in left eye because of cataract surgery. At least that part of me is working well now.One good eye out of two isn't too bad! I am beginning to have problems with puffy face, gaining weight in stomach and chin area, and weakness in muscles. I don't know if this is from cortisone I have taken over years or from cancer affecting these parts of my body. Pheo symptoms are coming back also, as the sweating and weak spells are back.
I was never promised a rose garden, but
it seems like I have had more than my share of problems. Well, like I said,
"It ain't easy bein' me," and I wouldn't wish this on my worst enemy. It
has always been said, The Good Lord never puts more on you than he thinks
you can handle, but it sure seems like He has a special eye on loading me
up. Oh, well, life goes on!