Sorry to hear you have this, Wendy. I had Pachymenengitis 4 years ago. Severe pain behind R eye and headache. 9 lumbar punctures until successful. Total of 14 MRIs. Final diagnosis by open Brain biopsy. Treated at University of Pennsylvania with a second opinion from University of Texas Austin. Treated first with pulse dose steroids that relieved the pain. They also caused a 36lb weight gain, blood sugars requiring insulin, myopathy requiring a year of physical therapy and speech problems. All of these are resolved. Treated subsequently with Rituximab. It was all pretty awful but is all in the past now. I am 80 y/o now. No longer being followed for the problem