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Susac's Disease (Page 1)

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HI there! I am new to this board and I am in desperate for some answers. I have recently become a care giver for a young 32 year old woman who has been diagnosed with SUSAC'S DISEASE. It is an autoimmune disorder that attacks your vision, hearing,loss of bowel control and a host of other things. She has had this for a couple of years now. There are only 201 people in the world that have ever been diagnosed with this horrible disease. Most doctors in our state have refused to care for her due to not knowing how to treat the disease nor wanting to be liable for her. She has had to leave our area to go to a MAYO clinic to receive some treatments such as IVIG and Steroid shots to keep from losing more of her vision and hearing.

I spent the morning with her at our local hospital where they agreed to take her in a few days ago as she had another bad spell. She is literally fighting for her life. She has been vomitting, in chronic constant pain with horrible headaches, I was with her as she lost the last of her vision in her left eye. Today she has chest pains and fainted as she was walking out of the bathroom. I couldn't get to her fast enough and she hit her head on the floor as I called for all the nurses. I think she may have had a stroke on the left side. She said she felt tingly and numb on that side as she was fainting. The doctor came in tested her and she did not feel anything has he used a pin and pricked her along her body in various locations. I wanted to just cry. Actually she, her mom and I all were teary. It's hard not to be. She is a wonderful lady who has such a great attitude in the middle of all this. Her husband left her when she got sick and she is raising two small children alone.

My question is....does anyone out there have this? Do you know anything that will help us get her help. She is in the fight of her life.
Thank you everyone! From the bottom of my heart thanks
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First Helper Nitesong34
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replied July 10th, 2008
Doctor
Susac's disease is a self-limiting disease so I don't think that the women will die. The problem is that in the half of the patients (mostly in those with severe symptoms) permanent health consequences will remain. Health consequences include mild to moderate demention, spastic motion and some degree of deafness. Blindness is rare.
Susac'c disease is treated with corticosteroids, some cytostatics and immunoglobulins.
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replied March 23rd, 2011
Susac Syndrome
Hello i just got diagnosed with this disease. I am trying to find out where to get treatment. What should i do do. I'm 32. I need help! Thank you.
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replied July 10th, 2008
THANK YOU
Thank you doctor for replying. I appreciate your reply and that gives me comfort that death doesn't occur from Susacs. But it sure is horrible watching all the things happen to her.
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replied November 2nd, 2008
nitesong34
hi my name is Shannon...my husband was recently dx with susacs syndrome too... he has all the same things happen to him as u have just stated too... it is horrible...im hoping that the docotrs can fix hijm but im not holding my breath... he is gettin really bad and is not on any meds for the susacs yet.......so im worried.. we see our neuro on tuesday i hope he does the right thing and starts the meds...i have 3 kids to care for and work cause he cannot anymore....its that bad...any help out there??? will he ever get better ...or will he end up in a wheelchair???..he lost the vision in his right eye in april 2001 from central retinal arterial occlusion.......whats next???


Shannon
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replied November 7th, 2008
susacs.
so we went to our neuro and he stated he does not think its susacs syndrome.....cause it has to manifest in his childhood....mind u i have researched it and have yet to see anything about it manifesting at a childhood age??? this is confussing... he stated my husband should go through a psych evaluation...stating its possible Conversion Disorder...go figure...thats what the last stupid neuro blamed it on and our psych did an evaluation and stated he does NOT have conversion disorder...im really gettin frustrated here...he is falling apart day by day and is still not on the steroids for Susacs syndrome... he has had 2 confirmed strokes and also had central retinal arterial occlusion in april of 2001 and lost his eye sight in the right eye..now our family doc mentioned susacs syndrome and he is gonna research it...well we will see him on the 11th of this month because i am NOT happy at all with the stupid neuros dx... i am seeking a second opinion on it...cause he has ruled out MS and cancer.....spinal taps...all clear....not rings in spinal fluids...so they say its not MS....but it could be Susacs...im a firm believer if he does not get the meds he needs NOW...its only gonna make him 100% WORSE!!! then will the stupid neuro finally TRY to fix him when he is wheelchair bound?? probably not...

Shannon*
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replied November 8th, 2008
hi again
HI Shannon! Susacs does not come on in childhood. My friend is 32 and she was fine and healthy until about age 30. That is when it came upon her. She is hanging in there. But now she has lost 60% of her hearing and vision. She has now lost most of her hair and is going wig shopping with her mother. She is taking this REAL hard and I can't blame her. It is horrific and she is an amazlingly strong woman. I would love for you to be able to talk to each other. Keep researching. Most doctors don't know much about it. To date there are only 201 cases reported. Just know your husband is not imagining it. Stay in touch ok! Good luck! God Bless!

Tammy
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Users who thank Nitesong34 for this post: shannon08 

replied November 9th, 2008
tammy
thank you for the reply....that gives me insight thats for sure...i think the neuro we seen was a quack....my hubby has been fine since april of 2001 when he lost the vision in his right eye...due to central retinal arterial occlusion....he lost that vision in his right eye.. then 2 years after that he had a stroke.....i would be very very happy to talk to her about this disease..my hubby is now 33 yrs old...we have ruled out ms and also cancer...his lesions are on the corpus callosum of his brain and they look like this...)(...it very very bizarre... please contact us as soon as u get this...we are looking for hope.... thank you so much....now we have ground to stand on!! and im also seekign a 2 opinion from a neuro at another university hospital!!.




Shannon*
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replied November 13th, 2008
susacs
My name is Lynn and i've been diagnosed with susacs. in fact i'm number 201 there were only 200 when they first diagnosed me. i've been trying to find others and would love to share on her i have the usual ears, eyes, memory and balance and have permenant dizziness which drives me crazy. my mind has come back mostly and i am walking albeit not well but nothing seems to help the dizziness. they thingk the susac has damaged my ear. was on 60mg prednisone now downto 10 been as low as 5 but had relapses but one thing thats never gone, although its improved is the dizziness. its been a terrible and depressing eigteen months or more and you're right the docs don't seem to know much.
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replied November 13th, 2008
hi
Hello Lynn! So sorry to hear that you have been diagnosed with SUSAC'S. I know how difficult it can be. My friend said she was number 201 being diagnosed, so maybe there are 202 people now. Regardless there needs be a treatment and cure found.

I hope you are managing the best that you can. I know how having health issues can bring on depression. I have my own health issues and spend plenty of time suffering and I rely on prayer to help me through. That and plenty of good friends to talk to. I hope that all of you with SUSAC'S can form some sort of support group. Please keep us posted on how you are doing. Are you located in the Midwest? Do your doctors have a treatment regime?

Take care now!
Tammy
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replied November 18th, 2008
susas
I'm in spam unapproved and so far haven't found anyone else.l there's nothing like this forum over here. have you heard anything else? do you know of anyone in aussie. I seem to be getting worse and now my right eye is bad and they don't know if its the cataracts caused by the prednisone or its a haemorrhage from the susacs.
sigh....hope someone can help.
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replied September 16th, 2012
susac symtrome please reply
hello my name is lindsay from spam unapproved ive been a carer to wife for almost 10 years who suffers from susac symdrome diagnosed in june 2003 age 53 the oldest ever to have contected this terrible sickness my wife canot hear at all and now almost wheelchait bound .i have been surching for a long time to get intouch with someone with susac but could not find anyone at all with susac symdrome in spam unapproved someone please get intouch i will be so glad thank you hoping to hear from someone from oz soon lindsay
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replied November 18th, 2008
Hello Mamalynn! I can put you in contact with my friend who is in the midst of suffering with SUSACS. I you want we can exchange emails. She would love to talk to you. It could be comforting and really helpful. Hang in there ok! I am so sorry to hear that you have this too.

Tammy
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replied November 19th, 2008
susacs syndeome
would love you to put us in contact if you can. love to exchange emails too. i'm in spam unapproved and don't know of anyone else here, although there could be. thanks for answering and offering what help you can. much appreciated.
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replied November 20th, 2008
susacs
have added you as a contact so hopefully we'll be able to exchange emails and get to talking to each other. they don't know why my right eye is misbehaving the cataracts don't seem to be doing it and theres no haemmoraghe that they can see but only went to emergency at hospital am away from home so don't know still what is causing it. i seem to be doing better than shannon08's husband. i've had and am having steroids and auto immune drugs and have had two rhesus for negative plasma exchanges which helped a bit but were very difficult for me because i have small veins. they didn't know if it would help, not help. think it did a bit. ...oh well keep onkeeping one at least my mind is mostly back. they think i also had a stroke, apparently susacs can mimic that, or c ause a real one who knows results i think are the same depending on the severity i guess.
well anyone with this my prayers are with you.
blessings
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replied November 28th, 2008
Extremely eHealthy
mamalynn!
What kind of visual changes you are experiencing?
For how long you have been taking corticosteroids?
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replied November 28th, 2008
susacs
already been to opthalmologist. prednisone caused cataracts but right eye got worse over last few weeks. been to an optho up here and he says macula ok, no extra signs of susacs or anything but the cataract in right eye has gotten bigger so need op in new year to remove it. have one in left. but its the dizziness that is really bothering me and balance. ears are not too bad. new neuro thinks there maybe migraine going on as well and has put me on sandomigran, but not seeming to help much and am 3 which is the dose he recommended to get up to.
thanks lynn
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replied November 28th, 2008
susacs
Tammy,
have sent an email to your friend but no reply. about 5 days ago. is she well enough? hope she's doing ok.
blessings Lynn
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replied December 7th, 2008
Hi
HI Lynn! I will check on her. I haven't heard from her in a couple of weeks. I hope she is alright. I will get back with you. Thanks!
Tammy
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replied December 7th, 2008
susacs
hi Tammy,
thanks for checking on your friend. hope she's not too bad. i'm not good my right eye is awful and presuming its the cataract that is growing quickly. been extra dizzy too and although its hard still getting around but having to really hang on. Ptl haven't had a lot of pain as such like headaches etc. there are things to be thankful for.
hope to hear from you soon.
god bless
Lynn
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replied December 10th, 2008
Info
HI Lynn! She said she hadn't heard from you. She would love to talk to you. Let me know if you make contact.

Thanks!
Tammy
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replied December 10th, 2008
susacs
will try again it was different to that .is this rudef@ can't quite see properly but will try with the f in. thanks Lynn
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