Hello Kt. I hope your husband is better now. Really SS is a very rare disorder that also present the problem that most physicians have little or no experience on it.

I am interesting in knowing your experience not with the SS but before it. What was the previous situation of your husband before the onset of the disease? Was he stressed, with a lot of work o similar? Please describe me his situation, his work, his life... Has he other concomitant diseases or treatment?.

I know also another case with a good outcome and we could share our experiencies.

Best wishes,

Toni

have in and don't know anyone else in australia with it. been suffering from it for almost 2 years . would like to contact the lady who wrote a note but can' find her now i've joined.

Did you get ahold of my friend Joy yet? The one that has Susacs?

Tammy

hi i'm in australia and finishing my second year of it. diagnosed in singapore came back to aussie and they had to do all the tests again. eye trouble due to the prednisone cataracts , the blockages from the susacs seem to have healed. dizziness is my main problem and walking lack of balance, also lost my short and long term memory for a period of months, don't remember hardly anything about my first three months in hospital. my mind has come back mostly although i have short term memory lapses and its frustrating, but most frustrating is the constant dizziness, but at least the vertigo has gone down. relapsed once and put me back in hospital. one 10mg prednisone, started on 60mg, and Imuran which is an immuno suppressant that they give to people who've had transplants. They told me it could cause cancer so i said "so if the disease doesn't kill me the drugs will" lol.
my body often doesn't feel like it belongs to me from the neck down. sigh... hope things go well for you.

My daughter has been diagnosed with Susac. It came on very quickly while she was pregaent with her second child. I have not found any layman explanation of what is going on. I am trying to remember if ther were any clues/symptoms that I should have known about. The only things I remember was her constant headaches and anxious. I am curious of any succes stories. lease let me know. She is 26 years old.

I am a 35 year old woman taken into hospital after a period of worsening headaches,numbness, vomiting and finally babbling and not knowing what to do with my baby at which point husband called the ambulance.From A&E to ICU to neuro ward for pretty much the next 5 months, lots of tests etc, came up with susac's syndrome and have experimented with various medications in an attempt to control it, at one point I had a new attack with blinding headache, vomiting and confusion every 2 weeks. Currently on I.V.I.G every 2 weeks, just finished a once a fortnight course of rituximab-now on a break for 6 months, daily prednisolone from 80mg down to 40, 1500mg of cellcept daily, tried cychlophosphamide but to no avail...
My main problem now that I am out of hospital and attempting to lead a 'normal' life is that I have no balance and cannot walk anywhere by myself, constantly dizzy and cannot manage my 3 small children, one 10 months and obviously needs lots of lifting which is not safe for me. Also my hearing fluctuates constantly and at the moment is all but gone so communication is not good.
Would love to hear from anyone with susacs- would be really interesting and would find it so reassring to pool information.

I have Susac syndrome - was diagnosed 3 months after my first child was born - started out with encephalopathy sysmptoms - hospitalized, underwent brain biosy, TEE, and a bunch of lab tests. All negative except for my MRI's which looked like MS(multiple sclerosis). I argued this when I came back to current events. As time went on I developed the BRAO - branch retinal artery occulusion and hearing diff. I have had 3 relapses. The disease has been explained to me as a relapsing/remitting autoimmune disease. I have been on Cytoxan in the past. Currently on CellCept, IVIG (immunoglobulin infusion) and prednisone(10mg) - this drug regimen as currently worked for a year. I am approaching my 5 year mark - hoping this means chances for relapse decrease. Several article I read in the beginning mentioned a 5 year course but current literature is changing some. Not sure if this babble helps. I am finally starting to feel like a normal person. SM

glad you're finally feeling normal. i'm not yet, the dizziness is what really drives me crazy and the balance as well as ears. heard it was 2-7 years. coming up for 2 years or just over. been through the babbling stage too. mostly ok but forget things i know i know.
all the best.

My wife has been suffering from Susac's for the past year. She's 35. It's been a nightmare, with 4 different doctors and 3 hospitals. Finally, a neurologist concluded she's suffering from Susac's. She lost her right hearing but she had tinnitus. The tinnitus is the one that's driving her crazy and vertigo next.

She's now on Epilin (a medication commonly used for epileptic fits) and seems ok for now. But every once a while, she gets this blinding headache and vertigo which pretty much ruins her day. She's seeing the neurologist twice a month to replenish the medication.

I'm from Malaysia (which is about 14 hours time difference with the US) and good neurologists are hard to come by here. Her current doctor said it's the first reported case of Susac's at least at this hospital.

I wish there was a more permanent fix for this, for all of us...

Am 35 years old mother of three (11 months, 4 years, 7 years) recently diagnosed with Susacs following occlusion in right eye 18 months ago and total (except my new friend tinnitis!) hearing loss in left ear 2008, another occlusion in Nov in right eye, partial hearing loss in right ear. Am onto a wonderful doc who is explaining the treatments well, but my understanding of what is actually happening to me is limited. Very grateful! Feel like i am in someone elses body though. Am on prednisolone, warafin and cyclophosomide (and a range of other preventative pills) which frightens me beyond belief. Just like everything else related to this appalling condition. Anyone know any reliable info on the average length of attacks actually is? does it truly burn itself out (and what is left) have read 2-5 years or somewhere in between? Would love some help on where i can get some documented and reliable info... Dr Susac available for a trip to OZ!!?? Also getting frustrated with peoples disbelief in the condition and also suffering from numerous people suggesting it is just Munchhausen’s (sp??), yeah, thanks a lot for that.

Hi you're in melbourne and i'm in sydney. Not that i'm glad you have it butits good to know someone in australia.
i changed my neuro because the first one said i just had to live with it, the dizziness that is. thats the worse for me, lost some hearing and have cataracts now from prednisone. When your relapse finishes do you loose the dizziness. I never have at all except for three days.
would love to hear what your sight/hearing/balance goes bakc to. normal/near normal/ or what. thanks.

I am actually pretty much at the start (first episode 18 mths ago, sight loss, but more recently both ears and more visual probs all affected with in 3 mths) The diziness and vertigo I had attributed to 'something' else as when I saw a GP about 1 year ago, he said it was just 'positional vertigo' and once you had it it was here for good, perhaps not true from what you describe. I will be having cyclo tomorrow and will ask the top doc then. So, in all my diziness has been coming and going over an 18mth period. Ok for ages, then the headache, then the running into walls. Feel like a timebomb... Makes driving with kids a bit frightening, especially as i cant really hear them! Annoying, but i guess you can live with it. Better just that than having more organs touched. That would be my preference any how! Sorry not of much help. Do you know of any other Aussies with it?

no but there must be some because while i was in queensland had to see a optho and he had treated one in sydney and one in melbourne but couldnt remember their names or anything.
I can't drive because my dizziness is non stop except for when i'm sitting and keeping my head still. new neuro who hopes he can help some of that but on prednisone 13mg Imuran 150 mg. and some other stuff for migraine treatment. feel like my body doesn't belongto me from the neck downwards. balance not good either, would never have been able to drive so you sound pretty mobile still. Its hard work for me to walk and my body feels like it weighs a hundred tonns.
best of luck to you.what is cyclo know what you mean feeling like a time bomb. I am really restricted to the unit i'm in and i'm 60 which makes me even more unusual for this syndrome. even when it burns itself out the question i have is what will we be left with? did you have any problems with memory?
I don't remember anything about the first 3 months in hospital .was in for 7 months.'
thanks for writing back. maybe our neuro's could compare notes? what do you think.

I am a 74 year old female, retired in good health with no stress. I was diagnosed in Mar. 2007. I received treatment with a neurologist within 2 weeks of the time I got sick. I had all the medications I've read about, but was out of the hospital in a week and am on no meds now. I have a 50% hearing loss and a slight balance problem. Dr. Susac thinks I am the oldest person to have Susac. He also thinks I will have no recurrances and believes I'm in the top 90% of the cases he is aware of.

Bonnie

like the title says I've had this for a year now. I was just starting to get my life together and now it came to a rapped halt. I would like words of encouragement that it will get better in stead of how bad it is for other people. I'm scared and afraid and I really don't have any one who knows what its like. I hate the front i have to put on for every one in my life to keep them feeling happy. I was once a great student in high school. and now I just feel like a living breathing blob that no one can understand because the susacs has messed up my speech and my ability to walk and now i fear I'm loosing hearing in both of my ears. I do not want this to happen I want to be a great mommy for my little girls not this!! please someone can you help me?

my friend had bad headache and next thing we knew sha was in hospital for 6 weeks as a friend im trying so hard to understsnd what shes goin through without makin her feel like a child again .her short term memory is bad .when u suffer from this condition do you want people to correct you so you then remember or does that drive u mad any other tips to help her as this is so new to all of us

I started having trouble with severe tinitus in my right ear off and on several years ago. Then in May of '08, the whistling and rushing sound and loss of hearing became so severe I couldn't focus and was prescribed Xanax for the anxiety it caused. Then in June, I suddenly experienced a BRAO--losing half of the sight in my right eye. I was subseqently diagnosed with non-ecephelitic Susac's--however I do have difficulty concentrating and experience a feeling of numbness and dizzyness--particulary on the right side of my head. This usually occurs during periods of stress. I went through a six week course of steriod infusions and am taking cellcept. My hearing had improved significatly until I came down with pneumonia and had to stop taking the cellcept for three weeks while on antibiotics to fight the pneumonia. The tinitius returned and my hearing got worse. I am back on the cellcept now, but I feel like I had taken a huge step backwards while fighting my illness. The plan is for me to start weaning off of the cellcept in January, but obviously I have reservations about that. I have been told that my vision will most likely never return. Questions: Does anyone out there experience the wierd numbness feeling in the head? Also, has anyone actually got their vision back?

I am a 45 year old New Zealander, diagnosed three years ago.I am slowly coming off my monthly treatments of Methylprednisolone. I too had hearing loss and BRAOs. I feel really positive about my outcome now. I feel like it is buring itself out.

Thanks kaiakonz!It's good to know that there is hope. Did you regain the eyesight lost from your BRAOs?