Go to egroups.com
there is a support group there for Susac Syndrome.
Good luck!
I am currently going through the tedious testing for Susac, in a place where professionals have never heard of it. I'm lost in the sea of, "What is it?" and in the next breath, "You probably don't have it because..." All I know is that progressive lesions, deafness, and variable visions and symptoms that mimic or are MS plague my life, and I praying for strength to want to push on.
Dear Christa:
I am sorry that you have this rare condition. I hope that treatment is helping (although many times one wonders if medical treatment is helpful) and are you getting hyperbaric treatment to help visual symptoms? For those on the forum who don't or haven't heard of Susac syndrome it is a microagniopathy of the brain, retina, and inner ear. It affects mostly adult women. It is unrelated to arterial hypertension or diabetes and is characterized by arteriolar branch occlusions of the brain, retina, and inner ear, with resultant encephalopathy, vision loss, vestibular dysfunction and asymmetrical sensorineural hearing loss. Treatment is usually with steriods, cyclophosphamide or antcoagulant therapy. Hyperbaric treatment may help visual symptoms.
Sincerely,
CCF Neuro MD