Hard day

I will make this as brief as possible. This week has been very hard due to an increase in my symptoms. The headaches and convulsions are pretty regular now. Met with a new Neurologist today. He reviewed my file and isn't comfortable with the Encephalopathy diagnoses. The convulsions got worse when I had to preform physical and memory tests at the same time. This is classic in epileptic convulsions, but he said they are too severe to have not shown up on my MRI or the two EEGs I had done last year. He is ordering an anti-convulsing medication, but this is expected to make some other symptoms worse. When I have two people talking or there is too much background noise, my brain will stop interpreting what is being said. The light is on...but no one is home. This will get worse. Dr. Restrepo is going to review all of my labs from the Endocrinologist and the Rheumatologist from the last year and then decide what he wants to do. I will go back on Oct. 11th

When the Mayo Clinic called me this afternoon to discuss the new symptoms, I was informed that the Doctor who has been following me is no longer there. The head of the Department called me and told me that since I was doing so well when I saw him, he now cannot say one way or the other about my diagnosis. He told me that I need to follow up with Restrepo and let him decide, or come off all of my medication and return to the Mayo Clinic while highly symptomatic. There is no way John and I could afford another trip to the Mayo, and coming off my medication is scary. If it is Encephalopathy, that could result in a coma, stroke, or death. If it is not encephalopathy, we do not know what could happen.