Hoping someone can share some experience, advice, and/or hope in figuring out what is happening with my husband.
My 33 year old husband presented abruptly with visual disturbances and delirium beginning on 1/3/12. The onset was rapid and dramatic, ocurrring in late afternoon. He had worked a normal day as a teacher, and picked up our 3 young kids after work. Symptoms struck on the ride home. I talked with those in contact with him throughout the day and they all reported he acted normally. Prior to these symptoms, he complained of difficulty sleeping and racing heart on 1/02/12; had strep throat dx 12/16/11; and had a root canal on 12/30/11. Beyond that, he has no remarkable med history and is otherwise healthy.
Since admission to the hospital he has become more and more delirious, but has short episodes of lucidity – especially following periods of rest. He has become profoundly sleep deprived, as he only gets about 2-4 hrs a sleep a night. Delirium has been accompanied by agitation and repetative limb movements, and he has complained that he can’t turn his mind off. He has become incontinent, and has difficulty eating and drinking while delirious. He has had three mild seizures, but has not experienced any more since beginning anticonvulsant medications.
Tests for bacterial and viral meningitis have been negative. He has also been tested for Wilson’s Disease, porphyria, heavy metal poisoning, HIV, and a host of other disorders. All have come back negative. EEG showed nothing remarkable, and CT and MRIs have been normal. The working diagnosis is “encephalitis of unknown origin.” The prevailing theory is that this is likely limbic encephalitis, but testing for protein markers and paraneoplastic markers in blood and CSF have not come back. He has a repeat lumbar puncture and MRI to check for changes (and I suspect to test for prion disease) tomorrow.
His current treatment regime includes anticonvulsants, sedatives, IVIG, and OTCs for fever, reflux, and constipation. He did not respond well to the use of antipsychotics to help manage the delirium. IVIG has not provided any significant improvement.
We are going on three weeks with little improvement in his condition, and while the doctors are working hard to determine the mechanisim of inflamation, they are beginning to grasp at straws. I am hoping that someone has had a similar experience and can offer some insight as to where to proceed next. I would like to keep him at his current location, but wonder if there are any other outlets I can suggest to the doctors.
Thank you for your feedback,