Discussions By Condition: Medical Stories

"too complicated to diagnose" CVID, EDS, IC, Pudendal neuralgia, terhered cord etc

Posted In: Medical Stories 1 Replies
  • Posted By: brokeninpieces
  • December 23, 2012
  • 11:55 PM

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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  • I know what you mean about doctors - most are very obtuse ... there are a VERY few who actually care about and treat their patients as family. Maybe that is why it takes YEARS to become one - they need to be told over and over and over and over in order to learn.. It appears to me these days if they haven't learned about it by studying by rote, it doesn't exist!.You need to get in touch with doctors who are researchers and actually use CRITICAL thinking skills, especially when it comes to pain. There are literally MILLIONS of people in pain NOW who will die by their own hand in the coming years because of the doctor's inability to treat anecdotal evidence as FACT moreso than what ANY test will tell them and if they actually DO start to listen to their patients, or, better yet, go back to school and get educated about PAIN, maybe a lot of people will be spared this terrible fate. I can only hope and pray they experience this type of pain for TEN MINUTES - I GUARANTEE you would have millions in funding IMMEDIATELY to treat these things properly. How they sleep at night is beyond me. Please don't give up. Try and find a doctor who is also religious ... or at least spiritual - they at least still seem to have the ability to THINK - PERIOD. I personally find most doctors on a parallel with those who have smoked marijuana long term. They have lost their ability to reason - killed their ability to LEARN by killing all their brain cells - (which are NEVER coming back BTW) causing their own mental illnesses such as those shown by recent gun shooters and serial killers and also they got into medicine purely for money, not for the love of, nor the care of patients. Their inability to even consider someone else's, or, especially a patient's, opinion, is seriously affected. They do not like to be told or lectured ... I could go on and on but I am sure they are well aware they have this sociopathic tendencies already.Their so-called OATH - above all else do no harm is laughable today. Personally I think they CAUSE fibromyalgia by not listening to what their patients tell them. I have seen this over and over and over and not just in the USA!Can I email you directly? At this point I hope you have at least received better care and perhaps met a doctor who will work with you. Please let me know how you are doing. I really do care.Take good care. <3
    MyraMaines58 2 Replies
    • December 31, 2012
    • 09:24 AM
    • 0
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