I want ANSWERS from my doctors. For example, I'm very concerned about
neurological problems and I am going to demand that a neurologist explain to me what is up with the white matter lesions. My last neurologist said 'it's no big deal, lots of migraine folks have them.' But I want to know how to prevent getting more and everything I have read says they CAN negatively effect function. I am scared crapless about
losing my mental faculties. I am going to take this to every doctor I see. I am going to keep seeing different doctors until I figure out what is going on. I'm so tired of sitting here alone late at night getting all upset. I don't want to wait around until I'm falling apart? AHHH! Anyway, it helps to see all the symptoms in one place for a doc, right?
conjunctivitis - inflamed and red blood vessels in my eyes, itchy eyes, migraines often accompanied by intense nausea and shortness of breath, two periventricular white matter lesions said to be caused by lack of blood flow to the brain/migraines, petechiae on shins and sporadically in other places, very red skin after showering with lukewarm water all over face, shoulders, neck and knees/thighs, rosacea, varicose veins and prominent veins on legs and stomach, kidney failure from HUS (resolved), Crohn's disease (ileitis), two gastric ulcers, bad chest pain, possibly from ulcers, frequent hives, bumps and itchiness on skin, hair loss, debilitating menstrual cramps, insomnia, trouble losing weight, easy weight gain despite Crohn's disease, some excessive hair, brain fog; loss of vocabulary and inability to think clearly, hormonal acne and oily skin (mostly resolved), extreme sensitivity to light, temperature and sounds, fatigue, joint pain, mostly in left knee but sometimes in hips, shoulders and other areas, achy muscles and joints, positive ANA test, seborrheic dermatitis, tingling in feet hands and other body parts
That way I won't forget anything and they can do their magic... I have a night like this every once in a while. I start freaking out about
how unhealthy I am and how I don't know why or what to do and how doctors don't seem to care or know either! Most of the time I am able to forget about
it, but is that really going to help me in the long run? I'm only 24! I don't want to feel as though I'm an old lady before my time.
24 yr old female. Diagnosed with Crohn's in 2006, but had symptoms since 2005 (currently in remission). Undetermined Lupus Diagnosis. Severe migraines. Medications: Nexium 40mg 1x daily, Pentasa 500mg 4x daily, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. Past medications... too many to list! I follow a mostly low fiber, low residue diet.
Post Edited (meowese) : 9/17/2008 11:33:07 PM (GMT-6)