Discussions By Condition: I cannot get a diagnosis.

beyond desperate with baffling symptoms

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: nosmartyr
  • January 31, 2007
  • 07:26 PM

My symptoms seem to come from a variety of disorders, but I haven't got any diagnoses other than endometriosis. I really doubt that it's causing all this. There is an abnormal structure in my uterus, but no one can tell me what. I've had 2 transvaginal ultrasounds, a CT, and a colonoscopy. Blood work has come back fine twice. I'm worried that it might be due to some neurological disorder. Here are my symptoms:Abdominal pain on the lower right that is constant and in the lower left that is periodic. Sometimes the pain will spike within an hour for no apparent reason to the point that I'm screaming, writhing, and tensing my whole body for hours and hours. I'd say it feels like the pain is coming in waves, but it's constant, so it's just increasing in waves. These writhe sessions, as I've come to call them, last up to 8 hours sometimes. My back hurts, lower and upper, as well as my shoulders and neck. I always keep a heating pad on and that helps, but means I can't leave the bed. These symptoms started over a year ago. The newer ones are hot flashes, headaches that last 12 hours and are only on the right side of my head(feels like I have the worst earache, like blood will shoot out my ear any second-the pressure behind my eye is so painful it feels like my eye is going to burst and my vision blurs-my temple throbs with pressure-my neck and shouler are so tight it feels like my muscles are going to snap)and these headachse aren't made any worse by light or sound or position or by rubbing, tapping, heating any part of my face or neck. The headaches start about a week and a half beofre my period and last all thru it and a week after it. I think this may be coincidence(my gyn just thinks they are period headachs) since I've never heard of anyone describe these symptoms as i experience them. During the period that I get the headaches I also get nauseous(dizziness, vertigo), but only on the days I'm not having the headache. The headaches and nausea both start about two hours after I wake up. The nausea lasts for about 8 hours. So, the first day I'll get really nauseous, the next day be fine except for the debilitating abdominal pain, the next day I'll get the headache, the next day I'll be fine, the next day I'll get the nausea, the next day the headache, next the nausea, then the headache..and they taper off like they came in. I've always had very poor balance, coordination, spatial perception. I didn't drive til I was 21 because of it. Lately(3 weeks) my balance has been worse, I'm always dizzy even when I'm sitting down, my spatial perception is so off that I'm always thrown by how close I am to stuff, esp when navigating to the bathroom. On my nauseous days every slight movement of my head causes the room to spin and me to reel with the sensation that I'm going to vomit. I've never thrown up on a nauseous day, though. I just really think I am, even tho I have never, maybe this time I will..it's that strong. For about a week I've been having trouble forming complete thoughts and though I've never had any issue at all with dyslexia I find myself typing and writing words all out of order. I don't recall things that just occured and often holler for my boyfriend when he is in another room, cuz to me he just vanished even though he told me slowly and carefully that he was leaving the room. Sometimes I look at an everyday object and can't place what it is, as if it's some alien form that I've never seen before. Most recently this happened with a water bottle that I have by my side 24/7 cuz I aslo have dry mouth. I don't have regular bowel movements. I go maybe every three days and when I do I have a very sharp aching along with sudden intense nausea that makes me rush to the bathroom. When I get there I just feel like I'm going to have loose stool. Instead I sit for 40 minutes to an hour with a huge boulder half in-half out and it feels like my pushing muscle is not working. It starts out okay, feels like it's gonna do it's job, but then craps out on me before the job is finished. It's gross, but I have to work it out with my finger just to get off the toilet. About 3 hours later I'll feel like I might have to poop again and I do, but this time it goes out easily and is very skinny and looks just like that old playdough pressed out a square snake and is greeninsh and slimy looking with rough edges. I pee very frequently(next on the list is interstitial cystitis-but I only have this one sign) and with small amounts of liquid. I can only drink half a can of natural soda before I have to pee and when I do it's clear, like the soda. I am never hungry, but I eat maybe a whole meals worth throughout the day. I tried taking colace, natural fiber supplements, and eating only fiber to regulate my stools to no effect. All of those at the same time didn't even do anything. I should mention that I recently developed a wheat allergy, so now i'm on an organic only, wheat and gluten free diet. Before I changed to the organic diet I was having a somewhat soft BM every morning like clockwork that was bloody as heck and so painful that I'd often scream. Back then I'd sometimes pass nothing but blood, thick, goopy, bright red blood. Now I just have bloody stool occassionally and only when I'm on my period. I use a wheelchair when I go out, which is rarely, cuz walking will induce the writhe sesions I spoke of earlier. Even walking down a flight of 13 stairs will cause such a spike in my pain that I crumple to the floor. When I walk I can feel a tugging synced with my right side pain that gets worse as I swing my leg behind my body. I had a lap dome to remove he endo and never experienced any relief for even an hour after the surgery. The good that came of that was the pain med, darvocet, that just knocked me out. I've been trying to get more narcotics ever since, but I am just told to take ibuprofen, naproxen, ultram. These don't help at all. I know the only reason the narcotic makes me feel better is cuz its masking my pain, but if you were in this much pain youd be begging for it too. Does anyone (please) have any idea what these symptoms could be related to? And do you have any idea how I can communicate to my doctors the amount of suffering I experience daily without being dramatic and sounding crazy? I need a strong painkiller. I got two oxycodone from a friends mom. They had 512 written on them. They only helped take a bit of th edge off for two hours and I had thought they were strong, since so many folks get adicted to them. Oh, please, tell me anything you think may be the problem. I'm beyond desperate here.

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