I am sorry for all you have been through. I am not 100 percent sure I have Clippers Disease yet but my Neurologist is pretty sure it is. To get to how I got diagnosed starts with a fall. I lost balance on my stairs 3 steps up flipped in mid air and hit my front door and got a concussion. I had prolonged post concussion syndrome and they did an MRI to check for possible brain bleed. What they found was spots on the pons of my brain. The pattern was that of Clippers. I have been through the spinal tap and the elimination of other auto immune diseases and factors that could be other than Clippers. I have constant headaches that feel like bees stinging me in the top middle of my head extending down the back of my head down to the base of my neck. The pain varies and gets worse as the day wears on. My vision is almost always blurred or doubled. If I stand and close my eyes I fall forward or sway greatly. My balance is terrible and it may be the reason for the fall on the stairs in the first place. I don't know if this is a symptom but my taste has changed and some foods taste different. I have tinnitus so bad it sounds like my head is full of cicadas. I am answering you because even if I am not 100 percent sure if this is it or not I would like to talk to people who are also trying to navigate the steroid treatments that bath energize you but at the same time you are beyond exhausted. The lack of sleep. Just not having anyone else who has a clue what you are going through. I know my symptoms are child's play compared to what your going through but surely we are not alone and others can discuss this with us.