Discussions By Condition: I cannot get a diagnosis.

medical mystery-please help!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: jroberts8
  • June 30, 2009
  • 04:05 AM

i'm a 17 yr. old female with many symptoms and a strange case..
it all started in october of 2008. i started getting very sick after a meal and did not stop vomiting. this has continued until the present and has gotten progressively worse. the first week of nov. i got extremely ill, i wasn't able to swallow and extremly week and tired. i got tested for mono three times and all tests came back negative. after three weeks of being ill, i lost 20 lbs and finally got back to feeling a better. the vomiting got a little bit better but still was going on. in feb. we went to puerto rico and that's when i started to throw up more. as soon as we got back i got extremely sick again with no stop vomiting (almost flu-like) i went to the doctor and hospital, got more blood tests, all normal. then by the end of the week i was admitted to the hospital to get fluids. i went home and the next day, returned to the hospital to stay for a few days to get "back on my feet". over the next few days, i continued to get worse. i had horrible lower back pain, abdominal pain, nausea, vomiting, and sore neck with enlarged lymphnodes. my abdominal pain is all over and very intense. i had a renal scan, upper endoscopy, and other tests. after spending a week in rock island hopsital, my mom and doctor decided to transfer me up to iowa city children's hospital. i stayed here for 2 1/2 weeks. i had every test done (mri, ct scan, pet scan, ultra sound, ect) and tons of blood work. i had a bone scan for my back and it lit up on my lower back but they have no idea what is causing this(maybe the bone marrow they say) my LDH level was over 1000 and my pet scan light up all over as red(the most it can be). in the hospital, i was diagnosed with hepititus and lyme disease. i got a bone marrow biopsy on both sides of my hip bones. this came back abnormal. i was diagnosed with lymphoma and told i would start chemo the next week. they did a lymphnode biopsy on my neck and put a port in on my right chest. the pathologist could not determine what i had. after 2 weeks of looking at it and determining "this is the weirdest thing i've ever seen" (said to my oncologist!). i was sent home to spend time with my family and my biopsies were sent off to 2 different pathologists. a week later i was admitted again for a week, came home again then back 2 more times. after the 1st time i left it can back i had ebv or ebstein bar virus with lymphoma. then just ebv and no lymphoma. they said all signs point to lymphoma (esp the abmormal bone marrow) i was put on gancyclover{spelled way wrong, sorry!!} (for patients who just had a transplant-help accept new organ) to help with the ebv. this had infected every node in my body including liver, spleen, and pancreas. my liver enzymes have been elevated and go up and down. my vomiting and nausea got progressively worse. the last time i was admited was in april. i got an feeding tube put in. then more tests were done. i had the tube in for a month to help me keep weight on. i started the whole ordeal at 170 lbs and am now 144 lbs. i cannot keep any food down at all, it all comes back up. ive had a total of 3 upper endoscopies, all fairly normal(no chrons, celialc, ect) i had yeast in my stomach so they thought auto immune disorder but that came back normal as well. they are talking about putting a feeding tube in my stomach if i continue losing weight. i have been battling consitpation the whole time(mucusy-bloody-white at times). i take meds to help with my stomachs mobility and constipation. i have tried every nausea medicine and nothing works. i have a few other minor symptoms as well. most of the time i feel like i cannot catch my breath or have to take lots of deep breaths. also, i get weird chills where i feel very hot but cold inside. i used to have horrible night sweats, they went away but they are slowly coming back. i have a terrible itchy feeling around my neck that never stops. i feel like i have a fever alot but my temp is normal around 96-97 degrees. i have started to bruise all the time now and i never have before. ive been blacking out a lot when i stand up and shake uncontrolably. i cannot see for 5 minutes and i have no idea why this keeps happening. im starting to feel better but it seems that i get extremely sick every few months :/ my pain still has not gone away and i've stopped taking my pain meds (didn't take away anyy pain) sorry that this is soo much info! it's been very frustrating and the doctors have no idea what's wrong with me. they call me their "medical mystery case" if you have any advice or info or anything at all, that would be greatly appreciated! you have no idea. thanks so much for your time!!!

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  • my story is not exactly like yours but there is enough similarity to make me wonder if we could be dealing with the same thing here.i am a 36 year old male, and my symptoms started in aug 07. i have had every test imaginable besides some of the bone marrow tests you described. ct scans multiple times of my upper and lower abdomen, with and without contrast, a colonoscopy and endoscopy, all kinds of blood and stool tests. everything comes back totally normal. these were the symptoms in order more or less, from aug 07 til now:pain in my upper right side of my abdomen, right at the bottom of my last rib, almost on the rib it self. this came and went for awhile. eventually i got really really sick with some kind of flu that gave me really weird muscle aches in my inner thighs and arms, along with severe nausea and strange dizzyness, as well as normal flu like symptoms. during this illness that lasted about 3 weeks, i lost literally 12 pounds. i am already a skinny guy at 6'2"/150 pounds so this was very alarming. during this time i also passed in my stool bright red blood, and a fair amount of it. this eventually stopped and i have seen none since then.i slowly recovered from that illness, but my stomach was never normal again. it always hurt a little and sometimes a lot. mostly in the center right where you get the wind knocked out of you if you get punched there. the pain sort of migrated around to different spots but was always present in some form. during this time i also felt like i had a mass of some kind in me, like i could feel right where my stomach was and all my insides were, all of them. it was like i could feel my whole digestive track from my throat to my butt.these symptoms eventually gave way, i think because i made sweeping changes in my diet like no coffee/tea/caffeine, sugar, fast food, quit smoking pot, and tried to drink only juice and water.this sorta worked for awhile but then the constipation thing started, along with a burning pain sensation that was more between my skin and abdominal muscles rather than in my stomach or intestines, sometimes across my chest but mostly across my lower abdominal area below my belly button from hip to hip. and now nausea and this repetitive flu-like state i am always in, that comes and goes. just when i think i'm getting better it comes back. i felt great the last four days and really thought maybe i was on a path to feeling better, but today i feel as bad as ever. weak, nauseated, sort of feverish and my stomach hurts, this time in the upper area instead of lower. i am on strong antibiotics for what my dr thinks is a sinus infection, but i really don't think it is. why would the feelings of illness come and go if it were a sinus infection?when this all started, all these symptoms would go away for days at a time and i would think i was getting better. then they would all come back, and slowly the frequency became more often, until now, where i am in discomfort pretty much all the time.to me this seems like some kind of immune system disorder. i have been sick over the last two years more than i ever have in my life, and the last 4 months i feel like i have been sick constantly.i am scheduled for another endoscopy/colonoscopy and some in depth immune system blood tests on the 6th of july. i will post my results when i get them.sorry i have no answers for you but at least know you're not alone out there.
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