Mollaret meningitis has controlled my life. I feel so badly for everyone on this website who has this horrible disease. I have looked and researched for years to find answers. Any answers. My health has not been good. Since being diagnosed first in the year 2000, I have had it three times. Each time was more severe than the last.
I did go to Mayo Clinic in Rochester MN to see if any specialists there could tell me more. I went to Rush University in Chicago. They did not have answers. I have been to many infectious disease doctors, seen so many specialists, blood test, lumbar punctures, brain, spine, neck MRI’s. I am left just thinking there is no cure. There is no help, and this disease is poorly researched and not fully understood. I continue to this day to look for answers. I am now 60 years old. I deal everyday with pain of some sort. Head, joint, bladder, skin, vision, rheumatoid arthritis with no rheumatoid markers, inflammation of the carotid artery sheath, vertigo, memory problems. I have learned to live with it and just keep going. It is very scary to think it can happen again.
I have some questions that if anyone has answers to, I would appreciate a lead. 1. Does anyone who suffers from MM have RH negative blood? Does anyone who has this disease have anyone else in their immediate family who also has or had the disease? How about immunodeficiency? I have it. I am very interested in why some of get this disease and if it has something to do with our blood.
I really do not think researchers or doctors understand the long term effects of having Mollaret’s. There needs to be someone who could extensively research and realize the pain we all are feeling. I do not understand why it is not taken more seriously. Prayers to all.