Discussions By Condition: I cannot get a diagnosis.

Frustrated. Need ideas.

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: Anonymous
  • February 12, 2008
  • 04:23 PM

This past September, I had a severe respiratory infection which was treated with two rounds of antibiotics, steroids and nebulizer treatments. I never recovered fully and just generally felt fatigued. In November I started having lower right abdominal pain, fever, chills, extreme exhaustion. Some weeks I was ok, other weeks I couldn't get out of bed. Just after the New Year, the pain worsened and I developed a severe case of diarrhea and vomiting which included large quantities of bright red blood involved in both. Went to the ER, they said colitis, gave me Cirpo and Flagyll and told me to see my GP. My GP said it was the flu or stress. :confused:

Since then I have been unable to eat anything without extreme pain and stomach upset. I've been in the hospital twice since for high fever, diarrhea, vomiting, and dehydration. I continue to have bleeding. I have had a rash off and on for 2 years that has really flared the last 6-8 weeks. I've lost 20 pounds since November. I can't function and spend most of the day laying down as my stomach is constantly cramping and my body hurts in a way I cannot describe.

I had a colonscopy last week and GI doc said ulcerative colitis or Chron's based on visible state of my colon. But, biopsies came back negative for both. Stool cultures and blood cultures are normal. All other bloodwork is normal, aside from my WBC which continually ranges between 12,000 and 22,000. Negative for Celiac Disease. Had a normal pelvic sono and also normal abdominal CAT scan.

I've had periods of being generally unwell for 7 years now. Time span between episodes can be as much as 1-2 years. The episodes started as extreme fatigue, joint pain, muscle achiness, chronic fever, and stomach upset. But, nothing has EVER been to this extreme. I also have a history of chronic tonsillitis, respiratory illness, rashes, asthma and unexplained recurrent miscarriage.

The GP always thinks its auto-immune but all tests are always negative. I can't get a referral to a Rheumatologist without a positive titre. I've seen an Infectious Disease doc who said I don't have an infectious disease and he can't help me. Now seeing the GI guy who is stumped by the apparently UC or Chron's that has biopsied normal. I've seen the GYN as well and everything is normal.

Anyone have any ideas? I've wondered if its some kind of extreme allergies?

All I know is I'm barely hanging on and running out of options as my symptoms are random and my bloodwork and testing is always relatively normal despite the apparent symptoms. I'm not thrilled with my GP who has chalked any and all illness I've had up to stress. Time for a second opinion?

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6 Replies:

  • Recurrent miscarriage jumps out at me. Has anyone considered your genetics? Such as, women born with only one X chromosome may miscarry repeatedly and have all kinds of strange symptoms that don't fit together. This is called Turner syndrome. Some of your symptoms fit Turner syndrome, and some don't. But it sounds suspiciously like a problem with yout genes.
    aquila 1263 Replies
    • February 12, 2008
    • 05:43 PM
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  • perhaps if the rash was biopsied, it might give you some clues..
    Monsterlove 2921 Replies
    • February 12, 2008
    • 07:16 PM
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  • Yes monsterlove, good point. I'm seeing my GP later this week so will mention it.
    Anonymous 42789 Replies
    • February 12, 2008
    • 08:05 PM
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  • AMF since you see a rheumatologist do me a favor ask them to give you a test- its called Anti glomeruler basement menmbrane antibody its one of the first tests that should be done with the vomiting and or coughing up blood- its a test for a disease called Goodpasture syndrome- I tested positive for it and its very rare and am going through ***l because they dont know how to treat it- I wouldnt get discouraged I dont want you to think you have it and get scared its just worth seeing if thats why the blood is there and then they would be able to treat it. Its often mistaken for pneumonia or a chest infection and you said respiratory illness and asthma and they are usually misdiagnosed for this disease. Let me know how you make out- it can be done with regular bloodwork they just may have never heard of it before because its really rare. Good luck and heres hoping help will come your way soon!
    bellasmom 9 Replies
    • February 13, 2008
    • 01:44 AM
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  • Not sure what you might have.But am sure that if your doctor thinks a consistently elevated white count and vomiting up blood might be "stress", then yes, indeed, it's time for a second opinion. Please don't go back to the GP.Sorry you have no answers and are suffering like this.
    Anonymous 42789 Replies
    • February 13, 2008
    • 03:31 AM
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  • Not sure what you might have. But am sure that if your doctor thinks a consistently elevated white count and vomiting up blood might be "stress", then yes, indeed, it's time for a second opinion. Please don't go back to the GP. Sorry you have no answers and are suffering like this. Yeah this has gone on so long, and my GP has been so nonchalant. I don't see how the severity of the symptoms I am having could be stress related or in my head! Thankfully the GI guy is moving things along. Had an upper GI and small intestine series this AM. Supposed to see him Friday. Aquila, looked up Turner Syndrome but definitely lacking most of the manifestations. Thanks tho. Bellasmom, sorry to hear about your diagnosis-- I will metion it to my doc. Trying to get into the rheumatologist but been having difficulty as my labs are "normal" as far as rheumatoid factor and ANAs. Blaze, I have had a lyme test which was neg. The EMR sickness stuff was interesting...
    Anonymous 42789 Replies
    • February 13, 2008
    • 02:36 PM
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