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Rare Diseases - scary and baffling illnes
Expert: Sam Beckett - 10/19/2006

Question
Dear Dr. Beckett,

My husband started having pain in his groin area about three and one half months ago. Over the course of time, this pain has spread; first down his left leg, and then up the entire left side of his body all the way to his head. This pain is extremely severe, and has also caused tightening of the chest and chest pains. Another strange symptom that has occurred is that, although the pain is extremely severe, when he places pressure on the affected areas, the pain does not get worse.

He has had several tests done including a CT scan, colonoscopy, as well as tests for Lyme Disease and thyroid problems, and all of the tests have come back negative, yet the pain in the left side of his body, and the tightening in his chest continues to worsen each day, to the point of debilitation. After months of tests, he seems to be no closer to a diagnosis and treatment than when he started to investigate this illness. We have both done quite a bit of research ourselves and have turned up nothing. We have also seen several blogs and message boards where there are others with the same symptoms who also have had no luck on finding a diagnosis. It has been very scary for both of us, to not be able to figure out anything at all (especially when a number of doctors tell you they have no clue as to what could be causing these symptoms, when the symptoms that you have are debilitating). Hopefully you hold the key to the diagnosis of this baffling illness, or can at least point us in the right direction. We thank you for your help and thoughtful consideration in this matter.