Discussions By Condition: I cannot get a diagnosis.

desperate for answers

Posted In: I cannot get a diagnosis. 21 Replies
  • Posted By: PrettiestWreck
  • March 7, 2008
  • 05:32 PM

i am a 24 yr old female. in september i began to suffer from severe left abdominal pain. i lost 10 lbs in a week. i had several ct scans, blood work, a colonoscopy and an mri. all they showed was that my kidney & my bowel were swollen, but they could not pin point the cause of the swelling or of my pain.

about two months ago i began to feel as though i was getting the flu. ive had no fever, but i am very achy & terribly weak. i cannot tollerate the cold. i still have intermitten pain in my left abdomin. id wake up in the middle of the night with swollen hands & feet & my body full of painful aches.

currently, the aches & weakness are so severe that i am unable to function normally. i am unable to walk very far. my legs begin to shake & feel as though they cannot support my weight. i have fallen several times. by the evening my neck & sholders begin to ache so badly i cannot hold my head up. im having trouble concentrating & also with remembering some things. i am much more irritable & depressed.

they have done many blood tests & cultures recently, but all have come back normal. i feel that my doctors do not take me seriously, meanwhile my symptoms keep worsening.

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21 Replies:

  • Have you tried a geneticist? They specialize in rare conditions whereas the doctors don't.Call a news channel and tell them what you've been going through.The squeaky wheel gets oiled, the louder you are the more likely you'll get heardGOOD LUCK!!!!
    aurora5us 1 Replies Flag this Response
  • I'm assuming with all these tests they have ruled out Liekeimia, sorry when you here symtoms like this you always go to some form of cancer. Have they done a bone marrow test? I wish you the best.
    valmond 7 Replies Flag this Response
  • i am a 24 yr old female. in september i began to suffer from severe left abdominal pain. i lost 10 lbs in a week. i had several ct scans, blood work, a colonoscopy and an mri. all they showed was that my kidney & my bowel were swollen, but they could not pin point the cause of the swelling or of my pain. about two months ago i began to feel as though i was getting the flu. ive had no fever, but i am very achy & terribly weak. i cannot tollerate the cold. i still have intermitten pain in my left abdomin. id wake up in the middle of the night with swollen hands & feet & my body full of painful aches. currently, the aches & weakness are so severe that i am unable to function normally. i am unable to walk very far. my legs begin to shake & feel as though they cannot support my weight. i have fallen several times. by the evening my neck & sholders begin to ache so badly i cannot hold my head up. im having trouble concentrating & also with remembering some things. i am much more irritable & depressed. they have done many blood tests & cultures recently, but all have come back normal. i feel that my doctors do not take me seriously, meanwhile my symptoms keep worsening. What medications are you currently taking, and are you on birth control or an IUD? Do you have any problems with your period? What is your digestion like - do you have any IBS symptoms? DOM
    acuann 3,080 Replies Flag this Response
  • I'm assuming with all these tests they have ruled out Liekeimia, sorry when you here symtoms like this you always go to some form of cancer. Have they done a bone marrow test? I wish you the best. they tell me that my white cell count isnt high & there is no reason to be concerned. theyve done a few CT scans that have shown unexplained sweeling, but no mysterious masses.
    PrettiestWreck 16 Replies Flag this Response
  • Have you tried a geneticist? They specialize in rare conditions whereas the doctors don't.Call a news channel and tell them what you've been going through.The squeaky wheel gets oiled, the louder you are the more likely you'll get heardGOOD LUCK!!!! no, i have not tried a geneticist, maybe this is something i should consider. i need to do something to be heard, bc im definately feeling pushed aside.
    PrettiestWreck 16 Replies Flag this Response
  • What medications are you currently taking, and are you on birth control or an IUD? Do you have any problems with your period? What is your digestion like - do you have any IBS symptoms? DOM im only taking zydone as needed for the pain in my abdomin, which isnt very often bc i hate taking narcotics. i take no birth control or any other type of medication currently. my periods are & have always been heavy & uncomfortable. i saw a gynocologist who ruled out endomitriosis & a few other things as well. i dont have IBS, i have seen a gi specialist & have even had a colonoscopy that came back totally normal.
    PrettiestWreck 16 Replies Flag this Response
  • What medications are you currently taking, and are you on birth control or an IUD? Do you have any problems with your period? What is your digestion like - do you have any IBS symptoms? DOM i take zydone for pain as needed, which isnt often bc i hate taking narcotics. i am not on birth control & currently on no other medications either. my period is & has always been heavy & uncomfortable. ive seen a gynocologist to rule out endoetriosis as well as a few other things. i do not have IBS. ive seen a GI specialist & even had a colonoscopy that came back competely normal.
    PrettiestWreck 16 Replies Flag this Response
  • I think you should see a urologist and track down the kidney problem. Have you been checked for tapeworms?
    Monsterlove 2,921 Replies Flag this Response
  • Have they ruled out diverticulitis? Crohns, Ulcerative Colitis? i am a 24 yr old female. in september i began to suffer from severe left abdominal pain. i lost 10 lbs in a week. i had several ct scans, blood work, a colonoscopy and an mri. all they showed was that my kidney & my bowel were swollen, but they could not pin point the cause of the swelling or of my pain. about two months ago i began to feel as though i was getting the flu. ive had no fever, but i am very achy & terribly weak. i cannot tollerate the cold. i still have intermitten pain in my left abdomin. id wake up in the middle of the night with swollen hands & feet & my body full of painful aches. currently, the aches & weakness are so severe that i am unable to function normally. i am unable to walk very far. my legs begin to shake & feel as though they cannot support my weight. i have fallen several times. by the evening my neck & sholders begin to ache so badly i cannot hold my head up. im having trouble concentrating & also with remembering some things. i am much more irritable & depressed. they have done many blood tests & cultures recently, but all have come back normal. i feel that my doctors do not take me seriously, meanwhile my symptoms keep worsening.
    TaylorDeelwithit 382 Replies Flag this Response
  • I think you should see a urologist and track down the kidney problem. Have you been checked for tapeworms? ive seen a urologist twice & they couldnt find any reason for the swelling. his best guess was that it was related to my past history of fractured lower back. however, i also saw a othapedic surgeon who said everything looked fine. i should be going for an emg soon.
    PrettiestWreck 16 Replies Flag this Response
  • Have they ruled out diverticulitis? Crohns, Ulcerative Colitis? they ruled out all three.
    PrettiestWreck 16 Replies Flag this Response
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  • Please tell us if you are on any medications, including birth control or IUD.DId you take any meds for anything at all in the past 8 months. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • Please tell us if you are on any medications, including birth control or IUD.DId you take any meds for anything at all in the past 8 months. Best wishesDOM no birth control or IUD. i only took the pill form of birth control but stopped taking it over a year ago. in the past six months ive taken zydone for pain & a few things they have tried in the process of figuring out whats going on. nothing more than a weeks worth of. prior to being sick i wasnt taking any medications.
    PrettiestWreck 16 Replies Flag this Response
  • You may have Guillain-Barré syndrome. Do a search for this on the internet.
    Anonymous 42,789 Replies Flag this Response
  • Sounds like Addison's Disease to me. Have you done any cortisol tests? Have you had your adrenal glands imaged?
    Anonymous 42,789 Replies Flag this Response
  • Sounds like Addison's Disease to me. Have you done any cortisol tests? Have you had your adrenal glands imaged? not that im aware of. i went to the er friday night bc i wasnt able to walk & the aches & pains were becoming unbareable. the doctors took a few viles of blood & told me that if there were anything wrong they would see some sort of enzymes in my blood to alert them there was a problem, but everything looked normal. they acted like i was a nutjob. im so frustrated!! my bloodwork is always normal.
    PrettiestWreck 16 Replies Flag this Response
  • You may have Guillain-Barré syndrome. Do a search for this on the internet. i just looked this up online & read about it & it sounds alot like what im going through.
    PrettiestWreck 16 Replies Flag this Response
  • i just looked this up online & read about it & it sounds alot like what im going through. I just reread your post, and agree that Guillaume Barre is a definite possibility...make sure they test for this and rule it out...I am not sure how they test for it but think it would be with a blood test. Guillaume Barre often starts as flu like symptoms. It can have fairly severe complications though this is rare. Most GB patients recover completely, although it may take several months. Please try acupuncture in the meantime to help with your symptoms. Acupuncture can be very helpful for Guillaume Barre and other symptoms you are experiencing. Please try it! Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • I just reread your post, and agree that Guillaume Barre is a definite possibility...make sure they test for this and rule it out...I am not sure how they test for it but think it would be with a blood test. Guillaume Barre often starts as flu like symptoms. It can have fairly severe complications though this is rare. Most GB patients recover completely, although it may take several months. Please try acupuncture in the meantime to help with your symptoms. Acupuncture can be very helpful for Guillaume Barre and other symptoms you are experiencing. Please try it! Best wishesDOM acupuncture? really? ive never tried it, but at this point would try just about anything. thank you!!im waiting for a call from a nuerologist tomorrow to find out the next step & when i will be schedualed for an apt. hopefully this set of drs listens & digs deep.
    PrettiestWreck 16 Replies Flag this Response
  • Possibly hereditary angioedema. www.haea.org
    aquila 1,263 Replies Flag this Response
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