Discussions By Condition: I cannot get a diagnosis.

Whipples Diagnosis HELP!! Please

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Elysabeth1
  • February 2, 2012
  • 04:37 PM

My friend has been very ill for about 4 years. Seizures, multiple surgeries, GI/digestion problems, consistent vomiting due to lack of digestion and food absorption, bruising appearing on the surfaces of the skin, and tons more. We live in a small town, and she has no insurance. Haven't found anything she's qualified for. Visits the ER almost on a weekly basis; and has the last 4 years. After the hospital couldn't diagnose a problem, they just labeled her a seeker. But she can't even stomach any pills. She's gone from about 230 lbs to 111 lbs in the last year alone. (no drugs are not an issue). Most ERs just run basic tests, IV, observe and release. (multiple GI tests and surgeries have been done) She was able to contact NORD (national organization for rare diseases) and the CDC, and they say it seems to fit Whipples Disease. VERY RARE and needs a specIalist who will perform a specific test for a diagnosis. They said if she is diagnosed they will cover the medical expenses, but now it's a matter with getting funding, coverage and someone to lIsten to her to get into the specialist. PLEASE HELP! She is withering away in front of me, and after 4 years we are almost there. I don't want her to die, and if it is Whipples it's fatal without treatment. Please and insight? More organizations we haven't found? She has two small children :(

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