Hello and Welcome to all new members. We are glad that you joined us, we will strive to give you the best possible Pituitary Chat Community. Minnie, Ben, and I (Meri) are the group's managers and Charlie is our Assistant manager. You can contact us at any time.
Who I am:
I am a twenty-five year old pituitary tumor patient. I was diagnosed with a microadenoma April 5, 2002. I was aware of having an "incidental" "rathke's cleft cyst" which I was diagnosed with in 1997. My initial symptoms were migraines, blurry vision, nausea, blackouts, vertigo, and lightheadedness. I saw a neurologist five years ago and he believed my symptoms were caused by "stress" because he believed I was an over-achiever in college/life. He advised I take a year off school; I took a year off school. I would not see another doctor for five more years.
Fast-forward to April 2002...over the years, I experienced many, many more symptoms including lactation, cold intollerance, easy and unexplained bruising, hot flashes, poor night vision, double vision, digestive problems, excessive hair, grey hair, irregular menses, sometimes non-existent menses, increased blackouts, daily migraines, etc. etc. I have had over sixty symptoms over the years. I saw a PCP and she ordered an MRI and checked my pituitary hormone levels. All my initial levels were low-or-high normal. I saw an endocrinologist and he believed I had abnormal cortisol levels, so he ordered a Dex-CRH test. I tested negative for Cushings. I found out later that the test was compromised.
From May-December of 2002, I saw a dozen specialists from many hospitals. The first neurosurgeon and endocrinologist that I consulted recommended surgery asap. I decided to get several second opinions. I traveled the east coast and consulted several neurosurgeons who did not recommend surgery at that time. I also consulted several neuroendocrinologists. I chose a neuroendo and neurosurgeon to head my case and I keep them informed of all my test results/health situation.
Since April of 2002, I have been diagnosed with a slowly-growing microadenoma (now 9.2mm*7.7mm-originally 5mm,) hypoglycaemia, insulin resistance, polycystic ovarian syndrome, six month history of large ovarian cysts, raynaud's syndrome, daily (ever-worsening) migraines, hypothyroidism, intermittent hyperprolactinemia, hypercortisolism, hypercalceamia, IBS, GERD, and lactose intolerance. I am currently being tested for Cushings and MEN (Multiple Endocrine Neoplasia.) Most recently, my adrenal MRI was inconclusive with a "mass-like area" above my left adrenal. The radiologist recommends a "dedicated adrenal CT." I am awaiting advice from my doctors on what should be done next.
I have fought for my care, diagnosis, and (hopefully) eventual treatment for the past year and a half. I have learned a great deal about all aspects of pituitary tumors, secondary diseases, medicine, and physicians. I have seen over two dozen specialists, most from top pituitary tumor centers. I have read dozens of texts and patient accounts of their own experiences. I try to educate myself as much as I can and encourage you to do so, also.
Before I was diagnosed, I studied criminal justice and was involved in law enforcement for several years. I also volunteered for many organizations as a counselor for victims of crime/rape. I now work pt at a Learning Center and pt at a publishing company. I hope to be able to continue my education and career goals in the near future. I have placed my life on hold way too long for a diagnosis and treatment that has not been forthcoming.
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Update:
I have avoided docs and tests since August '03 (4 months.) My next MRI and doc appts are in March '04. My newest symptoms include jaundice, constant circulation problems (numb extremities,) unexplained weight gain (I was a 6 this summer...now I am busting out of 10s (I don't have any 12s!!)-I have not been bigger than an 8 in six years!!! Grrrr! And I don't eat!), internal bleeding, severe dry skin, constant nightmares, worsening cognitive function, worsening st memory loss, and faint stretch marks. I will allow the testing to begin again after the new year. I have felt sickly for several months...worse than usual, so I plan to get back to testing in the near future.
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Please tell me a little about yourself and your health situation. Also, feel free to ask any questions that you may have. When I first joined the original Pituitary Tumor Community, I peppered everyone with questions. I have researched a great deal about all aspects of pituitary tumors. My advice is to research and learn all you can about your condition and possible treatment options. There are many knowledgeable members in this community who have experienced and/or researched the situation you may now find yourself in. Please share your questions and concerns, as well as your knowledge and experience.
Take care. You are in my prayers.
It's your turn...
Meri
