My name is Doug - I am the spouse to a Susac Warrior, Kim. She developed symptoms, very similar to the discussion in the previous February thread, last November (2018). She was diagnosed with Susac on December 20, 2018. She was diagnosed with “extreme-severe” symptoms. She has endured hearing loss, diminished eye sight and many lesions to the brain. She has also experienced psychosis on more than one occasion. Her continued battle has been exhausting and I have learned a great deal through the journey. Also, I appreciate the person who brought up Cellcept (mycophenolate mofetil). I will mention this to her neurologist during our next appointment. My sister and I have been in contact with Dr. Egan (Susac clinic in Washington), Dr. Rennebohm, Cleveland Clinic fro Susac, and Dr. Hardy, Sydney Australia Susac Clinic. I heard that there is also studies being conducted in a clinic in southern Florida. I am writing to share but to also learn from others as Susac does not have an “off the shelf” cure. I look forward to future discussions.
