Discussions By Condition: I cannot get a diagnosis.

unexplained bleeding

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • May 2, 2007
  • 00:06 AM

I am hoping someone on here can help point me in a direction I haven't thought of....I've been sick for about 9 months. My dr has run out of ideas as to what's wrong with me and isn't giving me any ideas where to go next. I am SO incredibly frustrated and tired of feeling like this. I would be extremely grateful for any insights anyone can give into my situation.

Here is a bit of history: I am 30 yrs old. I have asthma and a generally poor immune system (i seem to catch everything that goes around). I have had kidney stones and urinary tract infections since i was about 16. I was on birth control pills from the time I was 13 until Jan 2006--i had been having unexplained fainting spells, very low blood pressure and unexplained vaginal bleeding for 12 years or so...about a year and half ago, i got a blood clot in my arm after having an iv, so my drs decided I should not be on artificial hormones and to take me off the pill, which stopped all the fainting and vaginal bleeding. Being off the pill, i hadn't felt so good in years.

Here's my saga:
In July 06, I got a pretty bad UTI which was treated with antibiotics

In August 06, the UTI came back and was again treated with antibiotics

In September 06, I started having a horrible constant stabbing pain in my right kidney area. We did a CT scan and saw kidney stones were in there but had not moved since the last time I had an MRI or CT the previous year. Because I still had some bacteria in my urine, my dr thought the pain was just because the infection was really bad and had settled into my kidney. She gave me some stronger antibiotics in hopes that would fix it.

A few weeks later, the pain was still there plus I started having nosebleeds and coughing up blood. because i had previously had a blood clot (and because my brother had recently had a blood clot in his lungs), they did a CT of my lungs. No clot. My dr recommended i use nasal spray and take vicodin for the pain in hopes it would go away. The nosebleeds and coughing up blood subsided for a bit and then came back. I also periodically continued to have blood in my urine.

i tried my best to ignore the pain for a couple of months but it just became unbearable. My dr thought it might be something to do with my liver, so we took blood tests and a MRI which came back negative for any liver problems. My dr then sent me to a urologist. He did a cystoscopy and a nuclear scan of my kidneys. He found no good reason why i would be in so much pain based on my kidney physiology. The only slight issue with my right side is that the right kidney filtered slightly less efficiently than the left. Also, the stones were in the same location and had not moved. I also had mentioned my lung issues to him and he thought i should get tested for TB since i do work with indigent peoples. The TB test came back negative

Having failed to find an answer, i went back to my regular physician. She reviewed all the MRIs, CT scans, urine cultures, and blood work for the past year. She decided to get a test to see if my blood was clotting properly and also to see if i had some ANCA factors to see if i had a vasculitis. These just came back negative as well.

So, I have blood in my urine, nosebleeds, and i cough up blood on a regular basis. I have severe pain in my right mid back. I bruise easily and have been getting progressively more and more tired and without energy. My fainting has also come back. I am cold all the time.

Does anyone have any thoughts or ideas about what could be wrong or what type of specialist i should try to see? I'd be so appreciative of any ideas anyone has.

Thanks so much!

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2 Replies:

  • Oh my gosh, Erinn! Saga, indeed.:(I'm not even sure where to start...have you been to an immunologist? Vascular specialist?Here is a list I got from the Hemophilia foundation, since the problems you are having seem to be a bleeding problem: Causes Some bleeding disorders are present at birth and are caused by rare inherited disorders. Others are developed during certain illnesses (such as vitamin K deficiency, severe liver disease), or treatments (such as use of anticoagulant drugs or prolonged use of antibiotics). They can include hemophilia and other very rare blood disorders. There are many causes of bleeding disorders, including: von Willebrand's disease , which is an inherited blood disorder thought to affect between 1% and 2% of the population Immune system-related diseases, such as allergic reactions to medications, or reactions to an infection Cancer, such as leukemia, which is a blood cancer Liver disease Bone marrow problems Disseminated intravascular coagulation, which is a condition often associated with child bearing, cancer, or infection, in which the body's clotting system functions abnormally Pregnancy-associated eclampsia, also known as severe toxicity of pregnancy Organ transplant rejection o Hemophilia A and B , which are inherited blood disorders Exposure to snake venom Antibodies, a type of immune system protein, that destroy blood clotting factors Medicines, such as aspirin, heparin, warfarin, and drugs used to break up blood clots Congenital bleeding disorders are very rare, and with the exception of hemophilia and von Willebrand disease, education about them has not been a priority of the medical community. Most have only been discovered and described in the past few decades.You might want to contact them, yourself, and ask for a referral. Look at: http://www.hemophilia.orgBest,Shula
    Anonymous 42789 Replies Flag this Response
  • You also might want to visit a nephrologist (kidney doctor). the pain in your mid-back is your kidney area, and with the frequent UTI's, you should have your kidneys checked out, have you tried an internal medicine doctor?? also a hematologist (blood disorder doctor) Get some consults! Be aggressive about your medical care!! you need answers! If all else fails go to the ER and tell them your symptoms.GaNurse
    Anonymous 42789 Replies Flag this Response
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