Hi All looking for a little advice. My wife was diagnosed with Autoimmune Pancreatitis (AIP) about 2 years ago. It is a very long story and to try and make it a little simpler her symptoms were exactly the same as either Pancreatic Cancer or AIP. The only doubt in the doctor’s mind was that her pancreas biopsy was negative for both? She was started on steroids and got better to a degree but over the past two and a half years has been suffering a variety of symptoms.
She has always had upper right abdomen pain, stomach pain, dia, constipation, nausea:
Sometimes blood in stools, food in stools:
More recently pain in finger joints both hands and both hips sore. Sometimes describes it as all over body pain. She doesn't sleep well and is fatigued most days. She has one pupil bigger than the other and this only started after the initial problems but gets dismissed by docs. She gets headaches quite often now and recently started to develop urinary tract infections.
She has had every test really (endoscopies, colonoscopies, CT, MRI, Etc...) the only constant is raised CRP in blood test (nearly every blood test she has had, Inflammation markers in bowel biopsy and erratic Liver Function Tests.
Her Gastro doc did bloods he said would test for multi system problems and I assume he means lupus or vasculitus. but so far they are negative.
Is it possible to have negative blood tests for Lupus etc... but still have condition. She is in hospital at the moment and has basically told them she is not leaving until they tell her what it is as this week they said the initial diagnosis of AIP might have been wrong! She has been on Oramorph and codeine for two years to deal with pain and it’s got a bit too much for her. She is getting a head CT for the headaches this week and awaits further biopsy results from her stomach.
I'm sorry to hear your wife has been so ill. I'm afraid I don't have very many answers for your questions, however, I can tell you that yes, it is possible to have a negative lupus test even if you do have it. Quite often it takes several rounds of testing for lupus before results come back positive.
One thing that could possibly "help" make any lupus findings to be "found" easier is if she spends some time in the sun immediately prior to the blood test. In people who have lupus, spending time in the sun can make the markers for lupus rise in their blood so that they register easier on the test. Better yet, if she can spend time in the sun for several days before her test - doesn't have to be a lot of time - maybe an hour each day. I know that's very difficult right now with her being in the hospital, but if, by any chance, they do end up releasing her without an accurate diagnosis and they test her for lupus again in the future.
I'm glad she's getting a CT of the head while she's in the hospital - headaches, and especially migraine type headaches are very common with lupus, however, the fact that she has one pupil larger than the other is a bit concerning, especially if this is a new thing for her. Is the one pupil always larger than the other or does it only happen during a headache?
If she hasn't already, she probably needs to be seen by a rheumatologist - they would be the best type of doctor to be checking and treating any auto immune diseases, such as lupus. They also may have a better idea of what to check for than her GI doc.
Other than the pain meds and steroids, is she on any other medication?
I wish you both the best of luck and hope they can determine exactly what's going on real soon. Please keep me posted on how she's doing.
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