I have been diagnosed with Sneddons syndrome and APS anybody else?

[sharonap]

Symptoms are exactly same as hughes, still-births,miscarriages,strokes.

[daisyd]

Hi Sharon

I do, I was diagnosed from the symptoms and rash, awful memory.

I didn't know anything about it when I was diagnosed what a shock.

I tried to find out more about it. the Sneddons web site is useful for information.

but not o speak like we do on here. The person in charge has had some family problems at present.

So I go on a web site for rare and unusal syndromes I think there is about ? 8 of us on there with sneddons.

The site is called NORD team inspire.

Some of the other syndromes are really awful, actually makes you glad that you only have the syndrome you have got

As the syndrome is similar i think, to Hughes syndrome it would be nice if their was a part on here for those with Sneddons syndrome.

I have Hughes syndrome

epilepsy

oesteonecrosis

depression ( who wouldn't have )

On Warfarin Antidepressents and epilepsy meds and a few other pills for stomach, dizziness and cholestrol

Hope you are keeping well

Love Karen xx

[LisaWA in reply to daisyd]

Hi Karen, Can you tell me about your osteonecrosis?

I have issues with my maxillary bone...infection & Necrosis and I am going to another specialist on Monday...I think I am in for more surgery.

Thanks, Lisa in WA State

[sharonap in reply to daisyd]

Hi karen

Think I replied in the wrong place so trying again hopefully this is right.?

I was diagnosed 12 years ago through my symptoms and rash also, I use to have a brilliant consultant but hes retired so trying to find a new one, Most doctors dont know anything about sneddons.Started getting new symptoms dont know wether its sneddons or not,

Tried the sneddons web site but could not find anyone else to talk to.

I have had 3 strokes and a number of TIA's .

I have balance problems and have to use a stick to walk with, I also cannot walk in a straight line (look like i'm drunk when I walk).

Have no peripheral view out of right eye limited out of left..

My memory is really bad, sometimes in mid sentence I forget what I'm talking about..

I have peti-mal epilepsy, raynauds, migraines, diviticulitlis, APS

Iam on warfarin INr 3-4 weekly blood test, HRT cholestrol.

Agree with having own part of site.

Sharon xx

[sharonap in reply to daisyd]

hi karen

I have just joined NORD and it helps thhat theere are others out tthere and I'm not alone,

Wish none of us had it tho..... but thats life

Sharon xx

[teadonna]

HI Sharon.

I have been diagnosed with Sneddon's syndrome and anticoagulant lupus/APS.

I have had different symptons over the last 19 years and was finalised diagnosed in 2008. I know when i have to go to the hospital or new clinic appointments, i tell them i have sneddons and they more ofter or not have never heard of it. So i now carry a piece of paper which i keep with my yellow book whcih i have put information on regarding sneddon's syndrom and tell them to have a read rather than go through it all.

My condition started off with poor balance and diagnosed with vertigo, then came the headaches/ migraines which they diagnosed hemiplegic migraines. Have gone throught the menopause when i was 39 ish, then i had a stroke/tia was put on aspin/colipgel. Then i had a second stroke two years later and am now on warfarin for life, I have a rash on my feet, legs and arms etc which i hate as it looks disgusting.

APS/Sneddons have similar conditions. Since they increased my INR range betwee 3 - 4 the headaches have been loads better. Newest complaint is Knee joints where i have inflammation, so started on Iburophen which is helping with the pain.

Hope you keep well.

Donna

[emmaj]

If you dont mind me asking what blood results determined the sneddons? Im negative at the moment for everything and ive heard that aps with more neurological symptoms and eye pain is sneddons. Ive had stroke,miscarriages,postive anticardiolpin antibodies in the past,cateracts etc etc - how do i get a 'label', thanks

[daisyd in reply to emmaj]

Hi Emma I wouldn't worry about having a clicky jaw I think a lot of 'normal' people do as well

Love Karen xx

[daisyd]

The rash I feel is an awful reminder daily, of the diagnoses I try to ignore it.? Warfarin and Ibruprofen together ?

oesteonecrosis I have always had a bit of a clicky jaw I wonder if any others are the same. going to the Dentist is really difficult my jaw hurts for weeks afterwards.

The diagnosis for oesteronecrosis was made by bone biopsy. I have had back pain for years upper shoulder area, if it was lower I wouldn't be able to walk because of the pain.

It was dicovered after dexa scan given to check on oesteoporosis ?complication of clexane which showed that I has dense bones oposite to oesteoporosis.

Bone biopsy orthopeadic surgeon said I had the toughest bone he had ever seen,

I think I have it in most bones including my spine, not sure of future problems i might have from it. but at least the pain is ok if i don' t lift anything.

I will keep information on sneddons with my anticoagulant book good idea

SneddonsI don't know if anyone has been tested for it i think it is done by skin biopsy but I was diagnosed by the symptoms

Poor blood supply to the bones cause by long standing untreated Hughes syndrome, Nice, another thing to thank my Neurologist for

Karen xx.

[emmaj]

I have clicky jaw too - nightmare!!

[sharonap]

Thanks everyone for your replies, begining to think I was the only one could not find any information on internet.

I use to have a brilliant consultant who has now retired, so trying to find another one.

I was also diagnosed from my symptoms and rash, took about 4 years doctors kept telling me I was depressed it was all in my head. After 3 strokes the neurologist phoned me up at home to apologies and get me on warfarin.That was 12 years ago.

I have balance problems, have to use a stick to walk with and cannot walk in straight line (look like i'm drunk!

Have lost my peripheral (hope thats how you spell it) view out of both eyes.

Have peti-mal epilepsy, raynauds, migraines from when I was young, diviticulitits, lichen scercosis, high cholestrol, now experienceing severe pain in my face and eyes no pain killers stop it,

sharon

Think Ive wrote this in the wrong place (you would not believe I use to be a computer analyst) now even simple things confuse me!!

[cybermom]

could i ask if you have pain ?i was diagonised with hughes syndrome 4 years ago after 1 bad stroke and 4 smaller strokes and numerous hospital admissions im 45 now,am on warfarin 3.5 to 4.5 and lots of other meds, although pain is not as bad as it was i still have bad episodes of heavy pain, i keep been told i dont have lupus but i know its got to be some thing else.My worst pain is neck and shoulders,do you have bad pain issues,im wondering if i have sneddons.any thoughts appreciated (sorry about spelling ect ) x

[sharonap in reply to cybermom]

Hi cybermom

Yes I do suffer with really painful neck and shoulders as if my muscles are like stone just thought it was me!! (not stress which most doctors tell you it is as had it since was little).

I seem to get pain in random parts of my body my eye lids, face, hands, my heel and thats just today.

Hoping to see new consultant soon see if they can explain or help with the pain.

xx

[cybermom]

thanks for reply,how did you get the diagonis of sneddons?im under 2 hospitals and its never been mentioned,but finding out about it off here its sounds like my symptoms,im down london in 2 weeks for my APS will ask them if its possible i have it then.Glad to here im not the only one with random pains....you never know what will hurt next!hope we both get answers soon x

[sharonap in reply to cybermom]

I spent 2 years having test after test to be constantly told by GP and neurologist I was depressed and there was nothing wrong with me. I lost my eye sight (during a miscarriage) was told would do one more MRI if this showed nothing would have to see mental health team I agreed got phone call at home from neurologist I had been having strokes was put on warfarin at this time I seeen a reumotogist who said I had sneddons syndrome did not ask why/how just grateful that someone believed me. If I find out anymore information will let you know.xx

[cybermom]

thank you for your reply , take care x