APS and SNEDDONS

[traceylou]

I have been diagnosed with both SNEDDONS and APS by the professionals in London and locally the question I would like to know the answer to is what is Sneddons and the symptoms? I have now asked every consultant I see and they will not give an answer other it is APS and why do I want to know as it is for the medics...Please help....many thanks

[emmaj]

Ive questioned this and not really got anywhere, as far as im aware it is the more neurological form of APS, and i have been told i have the neurological form of APS but then my consultant said that sneddons was named after the man who did a survey/trials on a small group of patients and it was named after him but he didnt seem to have much respect for the survey/trials of it. Hope someone else has a better understanding of it x

[daisyd]

Hi Traceylou

I was told I have sneddons syndrome, their is a web site which explains the symptoms etc

It was a shock for me as it will probably be for you, But warfarin is the treatment. The hospitals haven't always put Sneddons as my diagnosis. Cerebral APS. Small vessel disease brain,is also used.

I have the rash as well livedo reticularis

I have epilepsy and oesteonecrosis. Mild mitral regurgitation, I no longer have seizures, due to medication Depression and my brain memory etc has improved since going on Warfarin although not good

I am going to be seen in St Thomas's by a Neurologist, one that actually believes in Hughes syndrome. I am going to have a scan next week ?? Call a pet scan, begins with p anyway.

Will let. You know. I think most of the damage to my brain was before I was put on anticoagulants, so thank goodness for Warfarin

[CanaryDiamond10 in reply to daisyd]

en.wikipedia.org/wiki/Posit...

This should explain the test to you. Cut & paste it into your browser and I hope it works for you.

C

[stillwaiting]

Crikey, my aps symptoms are largely neurological and having looked this up via a general google search I can see that so much of it relates to me.

Thank you for posting this.

Lynn.x.

[momtomany]

I'm glad you brought this up. I recently found the Sneddons site and was surprised to see the similarities with this and APS. I have had miscarriages, but stroke is my only thrombosis, and I now question whether I also have this disorder. It seems as though distinguishing between the two is very difficult, and researching Sneddons makes me even more confused (as if the APS brain fog isn't enough :I). I wonder how many of us have been given the correct diagnosis, or even if we can somehow have both diseases?

[Hidden]

As with all autoimmune conditions, it is very possible to have both and is often seen in patients with APS or lupus. Have a look at Patient UK: patient.co.uk/doctor/Sneddo... as this is where the GPs will look first for information.

[sharonap]

I was diagnosed with Sneddons syndrome 14 years ago I also have been diagnosed with APS as well. As far as I was lead to believe my strokes,cognitive problems, involuntary muscle spasms, tremors inability to walk in straight line, balance problems relate to sneddons my miscarriages/stillborns blood clot following op. fatigue is down to APS.

Once I was put on warfarin the symptoms improved slightly but following a stroke last year the are beginig to progress.

[daisyd in reply to sharonap]

Gosh Sharon, the walking in straight lines.i thought was just me.it really annoys my husband, I am always getting in people's way, loosing my balance, spilling things. I have Sneddons and Hughes

[sharonap in reply to daisyd]

I know I use to end up walking over peoples lawns...Im sure people thought I was drunk! I use to walk off to the left so physio made me use a stick in left hand and it really helps not 100% but I keep to the pavement now. At the moment I have major problem with memory/recall Iam unable to recall events of my life...I know they happened (so its not I ve forgotten) I just cannot recall them or theres no emotion attached to them.

[daisyd]

Hi I have just written a post which mentions sneddons and hydroxychloroquine maybe worth a look if you haven't see it already

[traceylou]

Daisy could you please redirect me to this post as Ive looked and I cannot find it?? many thanks