Discussions By Condition: I cannot get a diagnosis.

Mystery disease - please help

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: Anonymous
  • April 22, 2008
  • 10:53 PM

Hello - I need help badly. My husband is currently in the hospital again, and the doctors are puzzled. Can not get a diagnosis. Here are his specs:

Age 53
Sudden onset of severe headaches in right temporal area on Nov 29, 2007
Pain is so severe it causes vomiting
If pain is not bad, he can eat and keeps food down. If pain is severe, everything comes up.
Random relief from pain meds - sometimes Ibprofen works Ok for a short time, sometimes Vicodin works, most of the time the heavier pain meds don't work and make him throw up for 3-4 days afterwards.
Was in emergency room Nov 29th. Diagnosis was Bell's palsy because right eye could not close and right side of face was drooping. All other body parts on right side were not affected. Pain was severe on right side of head.
After much testing and throwing out possible causes for head pain, Doctors thought perhaps an ear infection was going on, even though fluid in ears didn't look that bad. Did have an infection in the mastoid area behind right ear, but again, not bad enough to cause this severe of pain. Could not see swelling or redness on skin behind ear. Tubes were inserted in to both ears. Pain did subside. Husband was on interveinous IV treatment once a day for three weeks after discharge from hospital. Pain was gone at this time and no pain until mid March. In Mid March, husband complained of severe pain in his right hip area similar to symptoms of a sciatic nerve problem. Head pain returned within days afterward and became severe again. The pain is 24/7 - never lets up. Pain meds to not seem to work to take the pain away much at all.
Pain in right hip area seemed to let up as the head pain became worse. But husband would mention that his back hurt (right area over kidney) when getting in or out of vehicle.
When we went to Urgent Care, they palpitated lower stomach area and it was tender on the right side in the groin area. The Doctors thought perhaps he had a slight hernia from throwing up so much and such severe dry heaves.
An ultrasound was done on that area - then an xray or ct scan - everything looks clear - no hernia, no colon or intestinal problems.
An MRV was done on right head area and all looked clear - no tumor, no blot clot.
White blood count is currently between 25,000 and 30,000
Platlet count is very high - over a million I believe currently
Sediment (?) rate is over 90
He is peeing and pooping fine - no trouble there. No vomiting unless the pain is there. Any pain pills given by mouth make him vomit. Right now he is hooked up to IV fluids, has an IV antibiotic infusion once a day and is self-medicating for the pain by pushing a button to release pain meds in to his system through the IV every 8 minutes. Pain is still constant and he gets little relief even by taking pain meds this often. He also has a pain patch on his back.

A flu shot was given two days before the onslot of all this head pain back in November 2007.

Any questions, help, suggestions at this point would be much appreciated. Doctors mentioned today taking a whole body scan so they could pin point where the majority of white blood cells were clustered, hoping to find an infection. They are not sure if the head pain is caused by the infection, or if two different things are going on.
Same symptoms this time as back in Nov, except no new facial sagging. By the way, face still has the same droopy eye and mouth. We've gone through eye infections and having his eye sewn shut to save the eye from drying out.
It appears there is an underlying infection, but every xray comes up short and shows nothing. They are also talking to blood specialists and infectious disease docs today.

The doc did think perhaps Wegener's disease, but lung xray and blood work came back all clear.
So much more I could add, but ask questions as needed if you need clarification.

Thank you,
Cindy Murdoch

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