I know well your frustration. I have the same issues and after over 40 doctors with mountains of blood work, which included Barrow's Neurological Institute, no results. I had to retire because i couldnt function on my own. I filed and received disability from SS. I finally went to a rheumatologist at Mayo Scottsdale. He sent me to a neurologist for tests that were conclusive to having severe vaculitis and RA. I was immediately put on high doses of prednisone and received infusions of Rutuximab. I responded immediately after two infusions. After 6 months the symptoms returned and I had one additional infusion. That was 4 yrs ago and I am on Cellcept to control the vasculitis which was brought on by Wegeners Gramulamatosis. I am taking Gabapentin and Fentynal patches for the severe pain. My life changed in one day from a healthy 50 yr old that never got sick or needed to go to the doctor to a cripple. I moved into an assisted living facility for over 2 yrs and required a motorized chair to get around. I gained nearly 100 pounds and couldn't literally get out of a chair. I went through a yr of physical therapy 3 times a week. I am now out of the facility, have no need for the chair, and am back to some kind of normalcy. My wife is an angel sent to me by God. She was my support through this and is still by my side. I just now began to drive but just short distances. There is hope but i never gave up. After tens of thousands of dollars (even with insurance) i am much better and I'm seeing the same doctor every 3 months including blood work. He makes sure all the markers for this stay in line and provides support. I wish you success and am so thankful for Mayo Clinic Connect. God speed.

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