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Vasculitis UK
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Susac’s syndrome

Anybody been diagnosed with susac’s syndrome I know it’s very rare but there’s not much out there on it

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Hi Debbie

Hadn't heard of susac syndrome before so just been Googling.

There's information on the NORD website. (National Organisation for Rare Diseases ) .

I read on the next website that came up, Cleveland Clinic, that it is an Autoimmune Disease.

Sorry to hear of your diagnosis. Have you had other Antibodies tested? Been thoroughly tested for other Autoimmune Diseases?

I'm guessing that you are under 3 Consultants - Eye Specialist, Neurologist and ENT for hearing problems as well as Vascular Specialist ?

Are you being treated with steroids?

Have you considered phoning the RNIB medical helpline? I found them very helpful for anything that caused vision impairment even if temporary.

Are you in UK or US?

There are some good US websites :

GARD (has a helpline in US but lots of info on the website).

Creaky.joints.org (clear info on this site).

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Thankyou Mary I’m in the uk , diagnosed with cnsv in April last year but this is more like ms my speech is affected but it allways was since I had a stroke , I’m seeing eye specialist week after next , neurologist thinks it’s susacs and I have a brilliant rheumatologist , had a hearing test a month ago and no problems ( at min)

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Yes weaning off I’m on 22.5 mgs and when I lower dose speech normally gets worse and I have a stutter I’m on azathioprine now as well

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I read that sometimes there is a misdiagnosis of MS initially. It's also reported as mistakenly diagnosed as Central Nervous System Vasculitis by the "creakyjoints" website. So it's thought that there's a possibility of more cases than actually reported (313 ?).

Dr John Susac first reported it in 1979.

You must have tested positive for the Antibodies? Ask Neurologist?

Have you been able to find all the websites and info?

I have Hashimoto's Autoimmune Thyroiditis (named after the doctor who discovered it). My Antibodies mistakenly attack the healthy tissue of the Thyroid gland. But my Autoimmune Disease is common.

Your antibodies mistakenly attack the lining of the smallest blood vessels in the brain, the retina of the eye and inner ear.

Has any of the Consultants told you how long you will be on treatment for? I think a more appropriate name for it would be Susac's Arteritis. But that's just my thoughts!

My husband had Temporal Arteritis / Giant Cell Arteritis. He had high dose steroids treatment, tapering. He was told it would be 2 years possibly 3.

Looks like you need the 22.5mg dose a while longer. He was a bit up & down when he got down to the 25mg dose. Different condition, I know, but treatment (in part) similar.

Haven't heard of azathioprine.

It's good news that your hearing hasn't been affected. Hopefully, being on the treatment will help prevent this? I don't really know , as not had experience of Susac. The info on the net says you can get one or a combination of any of the 3 conditions.

Have you put on weight with the treatment? My husband's excess weight and "moon" face eventually disapeared after treatment finished.

Hope this all settles down for you. It's good to hear you have a good Rheumatologist.

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I always said it was like ms hair is a problem and walking sometimes feels like my brain is just there but not mine So frustrating , they want me to get to 20 mgs of steroids I’m doing ok usually stammer gets worse but doing ok at min but my eyes are bloodshot and run constantly been months now but I hope they don’t increase them I’ve put 3 stone on X

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I’ve put on 9 stone over 7 years xx

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Ah crickey are you on steroids ? I’ve heard when u get to 10 mgs it comes off easier x

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Do you have susacs syndrome x

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Yes I’ve had it for 7 years! And yes I’ve also been on steroids for 7 years! Lol I used to be a dancer 💃🏼 not anymore xx

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Yeah it’s crap , I was a nurse I’m not now x there trying to get me off steroids I’m at 22.5 when 20mgs they’ll review it , do you get any symptoms if u drop ? Are you in remission ? I read it goes within 1-3 yrs , what are/ were your symptoms. I know I’ve put loads of questions I’m sorry but feel like nobody to ask x

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Yes! And I’m on 10 MG’s now and it’s not going anywhere lol! I’m on a low calorie diet aswell! Lol x

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Omg there’s not many lol 300 ish world wide ! That’s amazing someone to ask questions too xx

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When I was diagnosed there was only 250 lol I think there is about 500 now! Logged but nobody knows! x

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We’re def one offs x so what’s your story ? I was admitted to hospital in April they thought I had cnsv and a stroke but they now think it’s susacs I think they’re right , my eyes run constantly and are always bloosshot and it’s def like ms speech is affected too x

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Well according to my mum I don’t remember anything, I woke up 2012 end of January saying Merry Christmas, obviously it wasn’t Xmas day and I literally turned into a child, she took me to hospital and think they sent me home saying I’d taken something even though I couldn’t see his finger. I also thought I was in Great Yarmouth as this disease takes u back to your happiest place, mine was with my Nan and Grandad on a sea side holiday in GY. I had a lumber puncture, 100 tests. And was diagnosed the 10th of February 2012. My mum said is this life threatening and the neurologist said potentionally. I’ve been generally getting worse my Susacs is now progressive Susacs. So I’m due to have an in-depth MRI on the 11th in 3 days that will show if my Susacs is still active. Then I will have to have chemotherapy which I’ve been on for 7 years but I hasn’t been working as I have slight thinning on my brain and all my blood vessels in my eyes are twisted so yeah that’s my story lol. All I can say is I hope it isn’t Susacs because this is something I wouldn’t even wish on my worst enemy lol! Did I get everything right mum? Lol x

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Ah bless you x I woke up last April after days of headaches thought I’d had a stroke my speech was slurred ended up in hospital for 6 weeks I asked my mama boyfriend if he had his pet monkey I watched the snow coming from the ceiling tiles and told my mam ‘ my Mam works over there ( she didn’t I thought I was at Newcastle hospital and Durham anyway they said it was cerebral vasculitis Now neurologist thinks it’s susacs I wish it was none , I had a stroke in hospital but I feel like a caged animal I don’t go out on my own x

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I’m the same! I don’t have a 26 year olds life! If I go out with friends it’s not to go out getting drunk it’s just a walk around the park or a shopping centre, they have to watch me like a hawk! Bearing in mind that I have only became bowel incontinent over the past year, I have to take Linseeds and even when I do, it doesn’t solve the problems! I also have IBS after I had my gallbladder removed at 16 it was attacked at 15. Susacs normally goes for the GI tract first, so I’ve had it since I was 15. But not diagnosed till 19. So when I should be living it large in the prime of my life I’m getting out with my mum by going to hospital appointments, again and again! Don’t know how to live a normal life as I will never be normal! X

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I know what you mean my life is hospital appointments with my Mam constant mris and neurology x

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It's awful when you become a professional patient. Sometimes, I have even cancelled appointments;( I am not recommending that), but sometimes you just need a break. I don't know anything about Susac's, but it is amazing how many autoimmune diseases there are. I have a cousin who has just been diagnosed with an autoimmune disease, attacking her LIVER. Never drank, except on a social occasion. She is in her 80's, just lost her husband, but she stays active and has a very positive attitude. I never heard of antibodies attacking the liver.

And so sorry for the young ones who are losing the joy of youth. I am 71, have 3 professional degrees, always active, exerciser and now not the so-called golden years- not so golden.

But best of luck, and do protect your vision per doctor's advice. Are you getting speech therapy?

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Hi thankyou for reply yeah I feel so sorry for children diagnosed so sad , I was diagnosed with cerebral vasculitis but neurologist thinks it’s this I agree after reading up on it

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Here's the RNIB Eye Helpline in case you would like to chat to a Medically qualified person there sometime. I found the medics very helpful with my husband's condition and more recently with a symptom I was having.

0303 123 9999

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Thank you xxx il give them a ring tomorrow xx

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Not hair is a problem I meant speech lol x

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Susac syndrome is an extremely rare utoimmune condition that affects the very small blood vessels in the brain, retina, and inner ear. The condition is characterized by three main symptoms: brain disease (encephalopathy), hearing loss, and vision loss. Some people may not have all the signs of Susac syndrome. Susac syndrome affects women more than men. The age at which symptoms “usually” between 20 and 40 years.

We only know of one person diagnosed with Susacs.

The Cleveland Clinic have a very good page describing Susacs if it helps my.clevelandclinic.org/heal...

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Thank you for the reply John , I was first diagnosed with cerebral vasculitis and I don’t know if this one is any better

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Hi Debbie

I’m in the UK, I think John is referring to my daughter Jessica, she was diagnosed with Susac Syndrome in February 2012 at aged 19 after being ill for some months, we are now 7 years into diagnosis & she is no better.

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Hello, I was diagnosed 10th of February 2012 7 years ago with Susacs Syndrome! Dr susacs died 10 days after I was diagnosed. Just my luck! I am now doubly incontinent, my memory is awful! I’m going through rehab at the moment for it with a neuropsychologist. My walking is still off! Where In the U.K. are you as I’m from Coventry! I have the triad(hearing loss, retina loss and encephalopathy) I have just found out I’m going colour blind, that the blood vessels in my eyes are twisted, which makes sense why I have such vile headaches! I haven’t got better I’ve got worse! It’s not for the weak this disease! My Susacs has now been said by my neurologist as progressive. Which is just great! The neurologist that diagnosed me told my mum I had to go away and get on with it! He was a (T***) we actually bumped into him at my gastroenterologist appointment the other day, and he didn’t know where to put his face! Please find me on Facebook or twitter as Jessica Lydon or JessieJean23 x

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Oh and I’m the only one in Coventry! Lol. Yay me! NOT

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On face book there is lots of Susacs patients around the world. Just search Susacs Syndrome and it will all come up, there is also a Susacs UK that I run! Xx

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I’m on a low dose of 10 mg at the moment but been on much higher before!

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Il be down to 20 mg tomorrow I couldn’t get past 27.5 mgs without itaffecting my speech but now it’s going ok x

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I can’t normally get down to any low dose but that’s why I’m having my mri Monday to see what’s going on in there! x

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Hope it went OK today

♡🌹🌹🌹♡

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It did thank you, was extremely long and it gave me a headache but it’s over and done with now! Thanks for asking xx

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