I just found this and am reading everything and it's all so helpful. I was recently diagnosed with sneddons, or seronegative APS. My doctor has only referred to it as Sneddons? I have had a PE, clot in my right eye, and a stroke, I just turned 19. Im wondering what other people's journey has been like? The research is so scarce and some is so outdated I wanted to try and get actual people's stories. I have tested positive for Hughes once, but negative 4 times so they are pretty confidant with sneddons, especially because I present with the rash and all the neurological symptoms. I just got in contact with a doctor in Idaho that seems to have seen multiple sneddons syndrome so I'm hoping for more detailed care, since my local hematologist has had little exposure to it. Thanks all!
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Turnbough01
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I have had problems starting years ago, started with balance, dizzy spells, then headaches which changed to migraines, then changed to Hemiplegic Migraines, because of numbness down one side of the body, then I had a stroke then two years later another stroke, thankfully the only damage really was I have lost part of the peripheral vision so my driving days are over. I was under one consultant who never really investigated, used to give me medication and then see him every couple of years, one of his colleagues was interested in the case and I was transferred under his care, . He did various blood tests, lumber puncture , muscle biopsy, skin biopsy then diagnosed me with Sneddon's syndrome/ Lupus /APS. who I see yearly and have a brain scan every two years. I am also under the care of the lupus unit at Guys and St Thomas hospital London.
I found that when they increased the warfarin range from 2 to 3 up to 3 to 4 my headaches decreased only get them now and again and are bearable, I find that if my range drops down to below 3 I get the headaches back. I had a clot in the back of the brain on the left side which affected main my sight. I have had inflammation of the eye was under moorfields eye hospital and if I get It again have to go back to them. I have livedo reticularis, underactive thyroid. I have recently had a total knee replacement on right knee in November and now waiting for left knee to be done, not sure if all the condition and symptoms are connected with sneddon's/lupus. I have also fractured metarasal and fracture my little finger. Had cellulitis in mu right leg. And most recently they have found a bosnick cyst 2f on my right kidney which they have done scan and may have to have kidney removed, still waiting for the final decision from the MD Meeting.
One of the doctors I saw said that sneddon syndrome and aps are the same that sneddons is another name for it.
I read that you have tested positive for Hughes once. Many members here can test negative for some time and then positive again.
I have learnt that 40 - 60 % of those with Sneddons syndrome test positive to antifosfolipidantibodies. It is a noninflammatory cerebrovascular disease. I do not know more.
As you have had severe symptoms you should contact a Doctor who really knows the difference between HS/APS and Sneddons. A Specialist of autoimmun illnesses.
Also i wonder if you have got some anticoagulation as that is the treatment for both HS and Sneddons at a high INR-level between 3.0 - 4.0?
Where do you live? I live in Sweden and here there are not many Doctors who know these illnesses. In the US that can be difficult to find a Doctor but we can help you here hopefully.
Hi, I have Sneddons and APS I have never been tested for APS as already on warfarin for sneddons but diagnosed clinically. I was diagnosed 18 years ago at the age of 37 following 3 strokes.
You can ask to be tested for Hughes Syndrome/APS even on Warfarin. It is only Lupus Anticoagulant (LA) you can not test. The Anticardiolipin antibodies (aCL) and also Anti-beta2-Glycoprotein-1 (anti-B2GP1) you can test.
Hi Lure2, this was 18+ years ago and at that time they took you off warfarin to test but due to my history, daughter at 32 weeks due to pre-eclampsia, stillborn twins, stillborn and 5 miscarriages, 4 strokes and number of Tia's they clinically diagnosed me. On warfarin inr 3-4 with tinzaparin when below 3.
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