Jeff, I don't know what to say, other than I'm sorry that you are suffering so much and for so long. My 71 yr. old husband had a condition that I don't think is properly diagnosed. It started when he tried to get out of be and fell 8 months ago. He called it "Jello legs" and at one point needed a walker. The ER doctors said he had "Deep Vein Thrombosis" and discharged him. He did have DVT and it was treated. A month later he fell again. We spent 6 days in the hospital and again given the DVT diagnosis and in addition Parkinson's. The vascular doctor cleared up the DVT and a second opinion neurologist removed the Parkinson's diagnosis and gave us a new one CIDP. This requires regular antibody infusions. We're still not sure that he has CIDP. My husband had been a heavy drinker but recently gave it up. We used google to help us figure out what is going on and came up with the possibility that he could have "Alocholic Neuropathy". We saw another neurologist who isn't so sure but agreed to gradually withdraw the infusions in the belief that if he doesn't have CIPD the withdrawal shouldn't effect him. We don't have an answer but found googling helpful. I wish you all the best!