I have a patient I have been advocating for since September. I was hired by the family. Joe (not real name) 44 yr old started having dizziness and balance problems 2.5 years ago. Fast forward to NOW. Joe is in a wheelchair with extreme dizziness and balance problems ( cerebellar related), decreased hearing, constant nausea, visual problems which include severe abnormal eye movements, double vision, ataxia, intermittent headaches, decreased feeling in left hand and muscle weakness. He has been to several neurologists in his local area and in a major city. Every lab and radiological test has been preformed. Nothing is positive. The last neurologist was hopeful and ruled out paraneoplastic syndrome and Multiple Sclerosis. Joe recently spent 10 days in the hospital receiving plasmapheresis treatments with no change. Internet , medline and NIH searches have been done. The doctors are now calling it idiopathic. Meaning no diagnosis, no available treatment, and no hope. Joe was an active husband and father, worked to provide for his family and now spends his days in a wheelchair hoping the day won’t be too bad.
Need Help: An undiagnosed neurological disease
There was so much hope with the last neurologist who admitted he was stumped. He was the first one to try anything. However, where to now? I am searching for suggestions as to options, centers, and any known wild and crazy neurologists, neurophysiologists, researchers who like to think outside the box nationally and internationally. What is experimental out there and where to look? Any ideas?