The story of Nancy
I have a rare autoimmune disease that has been diagnosed in approximately 475 people worldwide.
SS is often misdiagnosed as Multiple Sclerosis, since it may affect both the brain & eyes. However, it can also cause deafness which isn’t a symptom of MS.
SYMPTOMS MAY INCLUDE:
Migraine-like headaches, vision & hearing loss, tinnitus, bladder & fecal incontinence, memory loss, paranoia, confusion, spastic gait, numbness.
HOW TO BE DIAGNOSED:
The best way to be diagnosed is to see a Susac’s Syndrome expert who may have you take a Fluoroscein Angiogram test for the retinas of your eyes, an MRI to see if you have lesions in the Corpus Callosum part of your brain, and/or a hearing test to see if you have low tone hearing loss. A spinal tap will not help you get diagnosed.
POSSIBLE TREATMENTS:
Steroids, IVIG, cellcept & rituxin are some of the drugs that may be prescribed. Blood thinners are not recommended!
FOR MORE INFO:
Dr. Robert Rennebohm
Director of Susac Syndrome Program
@ Cleveland Clinic, Cleveland, OH
Phone: 216-445-6626
Email: [email protected]
Susac Syndrome Facebook Page
Monitored by SS experts, it is a great resource / support system for patients, families & caretakers from all over the world.