No doctor at any of the big teaching hospitals in my big city are interested in helping me. I have some type of still-unknown EDS/Marfan's mix (pending blood work for the usuals that can be deteremined by blood test). I have been dx with tethered cord at the age of 52 because I guess every neurologist before thought "surely someone must have done a complete neuro exam before, so no need to do one NOW..." So a lifetime of falling down and a bladder that can hold 2000cc is finally thought to be worth looking into. But I have been vomiting with a fever since MAY. Now seven plus months straight. I have lost 55 pounds, been dx with CVID along the way, an ascending thoracic aortic aneurysm, some kind of vascular problem that causes me to faint if I lift my arms or lose my voice, stumble, get nauseous when I stand for more than two minutes, I have developed ptosis in on eye and cataracts in the past three months where there were none before in April--by August I had cataracts. But not to worry! You have fibromyalgia!! Honestly, when I caught one neurologist about to say it, I said, "Dr. K, Don't you dare. I know fibro is a lazy doctor's diagnosis." He laughed nervously and turned to his resident and said, "ha ha, she already knows the truth!" Yes. I do know that doctors diagnose fibromyalgia when they are anxious to either get rid of a patient, or they are confused by the presentation of symptoms, and usually both. You would think that someone with several rare genetic conditions would be of interest to these doctors who just love to get published. But no. I think I look too sick maybe? My hair has mostly fallen out, but I don't have cancer. Yes, vomiting. But not nausea. That confuses them. Oh, they do a few tests, then they say, go see so and so, and ask him...get out in other words. Then they put in your record, "she seems very concerned....about x,y,z." You think so? Vomited away a third of my body weight. Don't get out of bed anymore because I faint, and can't sit because the bladder and vulva hurt so much. Can't even lean back in the car because the flank pain is too bad. Replaced the mattress three times trying to find one that doesn't hurt. Order the emesis bags by the GROSS from amazon. Yes, 144 of them a week at a cost of $84 a week. You have to have them you know, because a doctor just doesn't know what to do for refractory vomiting. They aren't prepared for you to throw up all over their offices. They say, you look great! You've lost weight! Uh, Dr. X, I can't eat, sleep, drink, sit, stand, drive, pee, or screw. yes, I'm thinnner, but something is wrong. But gee, you are soooo complicated, I can't diagnose you, even though I have every test in the world at my disposal and dozens of the world's best doctors in this very building! I wouldn't like to have to deal with someone who is not EASY. That's what it really is you know. They like easy. They like success. They don't want to have to work hard at say, MEDICINE. They don't actually DO medicine anymore. This country is worse than Britain with the Liverpool pathway. Here, they just don't bother. Maybe they figure I'm so far gone, why bother? But boy, they sure send out the bills quickly. I've been made NPO in hospitals and denied IV fluids because I was too dehydrated to get out blood, therefore, I was not PROVABLY dehydrated. honestly. They couldn't get the blood out of my veins because it was too thick--but they wrote in the record "no signs of dehydration." No urine for six days, can't get blood out, but NPO because of the vomiting and they don't check the urine ONCE or give IV fluids when someone is admitted for vomiting. And they can't diagnose me in six days? In one of the best hospitals in the WORLD? Why is that? Doctor incompetent? yes without a doubt. So next time we go to the OTHER world class hospital in town. There they miss an aortic aneurysm, but make note of "inferior bilateral pubic rami franctures" in a CT, but I am told, "nothing wrong in the pelvis, you are imagining the pain."
Fractures. They don't read their own reports EVER. I have learned to take the report with me, and use a highlighter pen, and then tell the resident, "please type this in from this report dated etc" otherwise they copy the reports into the record, but never ever read them. I wish I could get well. But do I expect to get diagnosed and treated for whatever is wrong. No. I have no such illusions. No doctor wants to be bothered. I'm not a senator or a movie star or a famous writer. I am a white, middle aged married Catholic woman who is "too complicated" to bother with. Good luck for me right? World class hospitals are a joke. First you have to find a doctor who actually WANTS to BE a DOCTOR. You know the old joke don't you: what's the difference between a Doctor and God? God doesn't think he's a doctor. Good luck to all of you on this forum. For most of you, putting your story out here is as close to medicine as you'll ever get, no matter how good your insurance or where you go, because they aren't in the LIFE business, they are really undertakers.
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