Friday, January 16, 2009

Rebecca (preacherteacher), undiagnosed bio

Hear my Cry for Help!

I was a happily married, 37 year old mother of 5, successful music teacher until this "thing" overtook my body. I went from being an active, healthy, popular child, teenager, and young adult who had easy pregnancies/deliveries/recoveries to what I am now: a FREAK of nature.

Symptoms I've noticed since the birth of my 5th son, a year ago: huge hump on my upper back that appeared out of nowhere and only gets bigger; rounded face, fat, red cheeks, and double/triple chin; stretch marks that are wider than 2 inches and longer than 6; abdominal boils and other skin infections that have to be lanced and won't heal; vision problems; SEVERE fatigue and weakness (yesterday I couldn't get the toothpaste out of the tube); sudden and intense headaches that come out of nowhere; skin that bruises so easily that I can no longer wear a bra, carry a diaper bag, or get my blood pressure checked without scrapes and bruising; thick and coarse hair sprouting of my cheeks, chin, breast, and toes; hair disappearing on my pubic area and head; dizziness; vertigo; EXTREME weight gain (I am 5'4" and now weigh 264.5--more than I've ever weighed); cracked lips and mouth ulcers and cracks on the sides of lips that won't heal; constant yeast and bacterial infections; heightened sensitivity to light, smells, and sounds; cloudy urine; varicose veins that are widening and throbbing; loss of memory and ability (I have double master's degrees in English and Music but had to ask my husband if America was a country the other day, and couldn't remember that my Mother took me shopping for black jeans a week ago); diarrhea; anxiety; depression; back ache; water retention so bad that jeans will fit one day and not the very next; arrhythmia and tachycardia; craving salty; bones popping and grinding; 4 root canals in past year; backache; neckache; numbness and tingling in extremities from time to time (or always being cold there); irregular and shortened periods; blemishes and sores inside my nose; insomnia; decreased libido and inability to orgasm; skin tags (near 50 the past year); and weird hyper-pigmentations on my face, under my eyes, and on my belly and elbows.

I was treated by my PCP who asked me to go to Vanderbilt and "be checked for Cushings". I went to Vanderbilt and was welcomed by a wonderful endocrinologist who instantly believed that I had Cushings and even commented that I "was like a walking textbook description of Cushings". My bp was 166/100 that day, and because my headaches and vision issues were so bad, she ordered an MRI thinking it was pituitary. MRI results didn't prove anything abnormal. She ordered 2 48-hour cortisol tests which also came back with "very normal levels" which means that she no longer wants to run the catscan on my abdomen to find the presence of adrenal tumors. My bloodtests came back with high chloride blood and love creatinine blood. Basically proves my muscles are wasting. No further comment.

This morning I spoke with her on the phone and it sounded as though she were finished treating me--she would "pass it by some colleagues...but with the cortisol levels being normal, there's really not Cushings afterall...". She asked me to "follow-up" with my PCP and "get a CBC to rule out the big things" such as AIDS and cancer. Geez. She also said I may be anemic. Um, ya. I've been anemic--even severely--for 3-5 years now.

I am frustrated, deeply depressed, in tears, very weak, tired, and not wanting to be another statistic that seems so common on this site--going through 18-30 physicians before someone finally notices that something is wrong with me. I know in my heart I have Cushings--what else could it be. But attempts to prove it seem futile, and I'm only getting worse. It seems easier to give up than to spend hundreds of thousands of dollars and turn into a guinea pig and pin cushion for someone to finally say, "oh ya--just because your urines were off doesn't matter--there's still clearly something wrong". I feel like I'm a candidate for "Mystery Diagnosis". Unfortunately, I don't have the patience or perseverence to sit around (or lie in bed all day, rather) and wait.

Any thoughts? Prayers don't seem to be working, even though I'm married to a preacher.


Email Rebecca

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