I have had an absolute nightmare with the diagnoses of APS, following many years of being diagnosed being low in antibodies and the Lupus Anticoagulant with various trips to immunology and rheumatology and after suffering from over six years of dizzy spells and intense blurred vision spells I was sent to London to the heamo's there. I was so pleased I was going to see the lady prof, after seeing two others first I have got very confused. I have had several small strokes and a larger stroke and suffered one dvt in my leg many years ago. On reviewing my scans they have found some evidence of inflammatory episodes in the past too, I was whisked off to see a neuro who seems to think that I do not have MS as well but mentioned the possibility of vasculitus, has anybody else had this? I was diagnosed in clinic by the lady prof with secondary APS and sneddons, I have looked on the sneddons web and they confirm that most people with sneddons are wrongly given the diagnoses of vasculitus. Now I just await another cross opinion, I do not think I can go on seeing different people-consultants, I so need a positive diagnoses so that I can come to terms with this illness, I am so sick and tired of feeling sick and tired. I just wondered if anybody knows who the best person to see in London as I feel that I really cannot keep going through this anymore. Any feed back would be appreciated.
Traceylouxxx
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traceylou
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Vasculitus is the speciality of Dr David D'Cruz - I'd say he was one of the world experts in it and it is quite rare. He works full time at St Thomas' Hospital currently in the Lupus Unit, and also one day privately at the London Lupus Centre at London Bridge Hospital.
Should I get a referral to him from my London consultant, I am very concerned what to think, I have contact numbers to contact London but do not seem to get replies?
Ive wondered about this too mate, i have had chronic eye pain for 6 months and decreasing vision - my opthalmic conslt says he is looking for vasculitis as that is what damages the eyesight with aps however he cant see it and doesnt know what causes the pain - ive asked about sneddons with mu neurologist and he says if MS was ruled out then i have full blown APS and sneddons is a 'cousin' of APS. Let me know how you get on as im seriously considering paying private to get my eyes sorted x
Hi emma I have severe eye pain and face pain and just about to go see opthamc consultant due to more sight loss I lost my pheripheral sight followling a stroke. I have sneddons syndrome and aps and going tomorrow to ask for referral to st thomas as cannot find anybody who knows anything about sneddons(original consultant retired) I had luba puncture to rule out ms when I first became ill.
I have now had four positive tests for the Lupus Anticoagulant over the last three years, but have always been neg for the others, I still have the awful rash all over my arms and face and my hands are swollen, my left eye is so painful too, still getting different answers from different consultants, Traceyloux
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Only in my head?! Really?! OMG so frustrated. Has anyone been to St. Thomas and what are the costs?
same 400mg has anyone tried it?
Has anyone else felt like they have been leftin limbo?
Going to see the Prof on Tuesday strangely nervous
Has anyone in the group with APS had DVT whilst on warfarin? What treatment and advice was given?
