In September 2009, my dad (born in 1935 with polymyositis in confirmed remission) went to the ER by squad approximately 2 days following a flu shot. He had thrush. He was acting odd - laughing constantly even with my mom paniced trying to figure out what was going on. He has progressive marked pain in his right foot moving up to his knee when the same thing started on his left side moving up in tandum on both sides. He was ventillated within 24 hours of admission due to the weakness of his breathing. We suspected Guillan Barre; however, the ICU Neurology specialists performed aplasmaphresis (spelling?) before inspecting his spinal fluid so the results returned inconclusive (they assumed Neuropathy). While they searched for a diagnosis, he entered kidney failure and began having bouts of confusion and delirium. His white blood cell count fluctuated from quite high levels although reduced with effective broad spectrum antibiotics; however, none of the tests to determine the infection came back conclusive. He was started on dialysis 3 times a week and stabilized over the course of 6 weeks to the point that he was transferred to a long term hospital.
He lasted there one night and was rushed back to the ER because he entered some sort of temporary vegetative state where his face resembled that of a stroke victim but the tests revealed no stroke took place.
He remained in the hospital for another couple of weeks while they still searched for a diagnosis going down primarily neurological paths feeling strongly that it was an immune system disorder of some sort.
So, upon restabilizing, he was sent to a different long term hospital where he started IVIG treatment based on an EMG results analysis by a Neurologist at this new long term hospital who subsequently diagnosed him with Guillan Barre. He progressed very slowly regaining slight movement in his hands and then regained the rest in the reverse order in which the pain began. His periods of delusion slowly subsided and he eventually emerged with his faculties although still in accute renal failure.
Now, fast forwarding to December, he continued to get better at the long term care hospital to the point where they felt he was ready for a skilled nursing facility for physical therapy while continuing dialysis 3 times a week and IVIG once a week. This continued in a positive direction through Easter Sunday where it was decided that his mobility had progressed enough that he was walking with a walker and slowly but surely regaining his balance starting to regain his physical capabilities.
From there, he was sent home. For 5 days, all was well. Returning from dialysis on that Wednesday, he fell on the concrete as for some reason, dialysis that day made him weaker than expected and no significant damage was caused - just some bruising and a knot on his back. 2 days following that; however, his confusion started to come back, he got significantly unresponsive at times and it got to the point that my parents decided he needed to return to the ER. He was diagnosed with pneumonia, had a course of broad spectrum antibiotics and it seemed to clear up. Now, he had to miss his regular weekly IVIG treatment due to the antibiotics and although still weak, was deemed well enough to go home.
Not home for even 12 hours and he became unresponsible, difficult to awaken, confused, and completely exhausted - constantly sleeping, complete loss of appetite (which had been building since he went back into the hospital - likely can be attributed to depression) and had developed thrush.
Now, back in ICU tonight, a Neurologist came in indicating that he doesn't think the initial diagnosis of Guillan Barre was correct. He said my dad definitely has a rare thing called jo 1 but nothing else really was fitting Guillan Barre nor did it seem to him as though it did from the beginning. Understanding this is quite the complicated case, my family is desperate to see if there is anyone out there with perhaps a passion for diagnostic research might have some creative ideas or obscure ideas that might help lead us to getting a diagnosis. Any suggestions would be so very much appreciated. It has been 9 months of sitting at the hospital every single day for 10-12 hours a day on a roller coaster of uncertainty.
Your time to even read this is appreciated.
Thank you kindly.