Susac Syndrome

[Christa]

Anyone out there with Susac Syndrome?  I would like to share information and concerns.  

I have had Susac for the last 10 years,and I have managed to complete my college education and get married, but in 1996 I had my second attack.  I am regaining my mobility and cognitive ability and would like to hear from anyone who has a similar handicap.  

Please post a reply if you know of anyone who shares my experiences and would like to talk about it in this forum.

[nurse12hr]

Go to egroups.com
there is a support group there for Susac Syndrome.
Good luck!

[Blessedanyway]

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.

[elephant215]

A related discussion, hello was started.

[RickD777]

A related discussion, Susac's Syndrome was started.

[CCF Neuro[P]-M.D.-RPS]

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