I think I just saw this show it was aired on TLC the learning channel and was titles Mystery Diagnosises. (july 13, 2008)
I have a 19 yr old daughter and it was describing many of her experiences and symptoms.
Symtoms of bizarre behavior and mood swings started by age 2 or 3 and by age 5 had been labled with every mental disorder in the book. She was seen by an endocrinologist at age 5. Elevated testoserone was noted and she had severe body order and some body hair. Still the metal illness diagnosis took center stage and life was miserable for our whole family. She did poorly in school - sleeping a lot- could have been harmone imbalance or the drugs for the mental illness diagnosis (depacote and lithium). Onset of puberty was at age 10 and followed by severe acne and weight gain. This again was attributed to the medication (Risperadol). At age 14 after having a bad throat/sinus infection she seemed to be unable to recover her normal health and was severly fatigued. She broke down in tears every morning on the way to school saying she was so tired and felt too bad to go to school. She was accused of just wanting to avoid school until I finally in my gut knew she was sick and starting pursuing answers. She also began having severe headaches at this time. Several requiring emergency room intervention. Her menstrual cycles had also ceased. After many specialists an indocrinologist hesitantly diagnosed her ACTH Deficiendy and started her on dexamethasone. She also say a neurologist for the headaches. His treatment was Topamax. After weeks of this treatment her symptoms only improved marginally. She remained on this treatment for several years with the doctors experimenting with weaning her off and the restarting her on the medications. Finally at age 16 her endocrinologist stated that he did not think that she had ACTH deficiency after all and that she could discontinue the dexamethasone. After several weeks her headaches escalated. From age 13 - 16 she had to withdraw from school twice and do homeschooling. She finally ended up just homeschooling throughout the rest of high school.
Today, she has managed to control her headaches somewhat by the use of birth control pills. She does not take any cortisol. She is fatigued often, doesn't sleep well at night. Has gained 20 or more pounds in the last 6 months and exercising and dieting does not seem to accomplish much. She will be moving away from home in another month and she is sick and tired of going to doctors and just wants to see herself as normal. I think I would have to have a very convincing argument to get her to go back to the drawing board to get proper diagnosis.
What should I do.
KM
