Does anybody know about Sneddons syndrome secondary to aps?

[traceylou]

I have been recently diagnosed with this, but I am convinced that I have Lupus also, can Lupus be dismissed, does anyone know what further tests I should have and what they are? I am seeing a heamotologist in London St. Thomas"s at the moment, they gave me some leaflets but seem to contradict a lot of the information in them. I feel so poorly all the time, does anyone know the best person to see there? Please help I am really getting worried, I understand that I have suffered multiple small cerebral infarcts, but there is also a larger infarct and my stroke consultant who I have been seeing since Feb 11 will not write this in any letters to my GP I do not know what to think, not getting any clear answers which is worrying.

Any advice?

Traceylou

[sharonap]

II have sneddons syndrome and APS I was diagnosed 14 years ago. I had already been tested for lupus (dont know what the blood test was called) MS and countless other conditions which where all negitive.

I too have multiple cerebral infarcts, I had 3 strokes before being diagnosed and have just had another one (jan 2012) I can understand how poorly you feel but once I started on warfarin the 'brain fog' started to improve.

I go on NORD website where there are a few others who havve sneddons which I have found helpful.

sharon xx

[traceylou in reply to sharonap]

THANK YOU SHARON

TRACEYLOUXXX

[Lesley_D]

Hi Traceylou, not having heard of Sneddons, I hav done a little reading and found the attached page :- sneddonsyndrome.org/Home_Pa...

Have a read, and see what you think, I hope you get some useful information.

Take care and smile

Lesley

[traceylou in reply to Lesley_D]

Thanks for that; all of it made sense but the pain in my face and left arm is now unbearable, Soon I shall be seeing a neuro regarding the signs of inflamation on my brain also. Take too

traceylouxxx

[emmaj]

Ive asked my neurologist about this as i was admitted to hospital after continuous eye pain and left side pain/weakness. I was told that if my MS test was negative then i have 'full blown aps' and sneddons is a 'cousin' of aps,and would fall under that umbrella too. My eye pain subsided when my inr was higher,ive only just started on warfarin, Ive also been told that these muscle problems/twitching I have is thrombotic episodes and the problem with aps is that it affects/targets the intricate blood vessels of the brain which cannot always be detected on mri scans - only in post mortems, so i read up on it and sneddons seems to be the more neuroligical presentation of aps, and my doctor said before i was admitted to hospital that 'my' aps is more neurological.

[traceylou in reply to emmaj]

Thank goodness that somebody else has the same i thought i was the only one. i have terrible eye pain and the same left sided weakness and my inr keeps dropping I find it so hard to stay at level. how high is your inr target?

[sharonap in reply to traceylou]

Snap I've just made another appointment with GP because I cannot take this pain in my eye/face any more. I wish I could crack the socket to stop the pain. Does your eyeball hurt mine is killing me at this moment?

Do you see a neurologist or rummetalogist or both??

I have INR weekly target 3.5 range 3-4.

sharon xx

[pumpkincake in reply to sharonap]

Hmmmm this is interesting. I get TERRIBLE eye pain...like my eyes are going to blow up. It can be awful. The docs attributed to occular migraines but it has never changed with meds.

[pumpkincake in reply to emmaj]

Emmaj...

You have some great points here... I have not been able to find a neurologist who understands APS. Did your Neurologist talk to you about muscle problems/twitching being thrombotic episodes and that APS affects the intricate blood vessels of the brain??

I WOULD LOVE to read this if you have an article or a web page or link!!

THank you so much !!!!!!!

[Lesley_D]

I had these symptoms you describe in the 90's I was taken into hospital for tests for MS, I became paraplegic, and I guess as Hughes wasn't known about then, they told me it must be in my mind - It was because of eye pain and loss of peripheral vision that they did the tests, and it was only this year that my specialist said, it was almost certainly the APS that caused the episode in the 90's but Sneddons has not been mentioned to me. I am now walking though and rarely suffer the eye pain as discussed, not sure why not but glad i don't - I feel for you all, but try to keep positive

Take care, keep well

Smiles

Lesley

[daisyd]

Just had a thought, there is a condition called eyeritus ? spelling it can come along with auto immune conditions and is very painful. think the treatment is steriod eye drops

Love karen xx

[emmaj]

My neurologist spoke to me about it when i asked about sneddons, the only info i could find was googling 'eye pain antiphospholipid', and once eye pain was there wrote down it got me thinking enough to ask him, he seems to think that the let side weakness was 'thrombotic episode with cva' and the muscle twitching was the neurologcal events from the aps. My opthalmologist cant find any reason for eye pain - and actually doesnt believe you ca have eye pain something to do with the lack of nerves in the yeball - but we all know you can!! Ive now had it for 6 months,with only a brief break when my INR was in range - mine should be within 3.5-4. My understanding is we have constant little 'strokes' due to these intricate vessels being blocked, which causes a lot of our symptoms. I think you should get an opthalmic consultant and a neurologist to talk x

[emmaj]

ps, my opthalmic consultant is looking for vasculitis as this is the thing that causes eye problems when you have an auto immune disorder - he hasnt found anything wrong with the eye apart from cupping of the discs though so i dont really get anywhere with him.

[daisyd]

Hi

I wrote a long comment but lost it some how, I have sneddons syndrome along with Hughes syndrome also bone necrosis and epilepsy

I also go on the Nord web site which I found very useful to.

I don't know what the difference is between cerebral APS and Sneddons but Warfarin Clexane improves the symptoms a lot, memory still not good though

Karen xx