I suffered daily headaches my whole life, fatigue, joint and muscle pain, miscarriages. Finally at the age of 44 I saw Prof Hughes who spotted I had livido too. I tested negative but ultimately I began warfarin. 8 years on I still take it but apart from headaches my old symptoms are returning. I have had no repeat tests for lupus anticoagulant due to the warfarin. I am so afraid of my negative results because one day Prof Hughes will not be practising and I have already had 2 great GPs who accepted my condition, retire. I have nobody medical on my side now. A haemo I saw last year wanted to undo Prof Hughes INR and put me down to 2. I will never see her again. The problem is some days I think it must all be wrong and I don't have it after all and I afraid for the future.
Sero negative and feeling like a fraud. - Hughes Syndrome A...
Sero negative and feeling like a fraud.
Hi there, don't let it make you too upset.. a lot of us feel like you about this subject and many of us are seronegative.. U spent quite a number of months fraudulently lying in bed in St Thomas' have multiple clots disolved with my first pregnancy, and still remain seronegative, although have passed a lupus test now - however my daughter has passed a test. More and more expertise on this disease plus publicity is driving it forward. There are other doctors at London Bridge, I don't do my tests there any more due to costs - is it possible you could get your GP to refer you into St Thomas? Is your new GP any good? Would they refer you? If the answer is no to being referred here: guysandstthomas.nhs.uk/our-... Could you perhaps take yourself back to London Bridge and see Professor Khamashtata or Professor Hughes. It sounds like you just need some more i's dotted. I know that I did and it worked. I take my most recent NHS tests results with me, I do the same with my private thryoid doctor! Just chip away and we will try and help you. I do see why you are worried about your INR! Mary F x
I originally saw Prof Hughes at Tommys. Tho that was not easy, was seen by a junior who did not believe me, but I spotted the prof in a corridor and quickly asked him if he would speak to me, he took me in a room and talked to me. When I wanted to change from plavix but could not get an appt for a year a private patient of his took him a letter from me and he sorted it out.
I last saw him at London Bridge in 2007 when he added plaquenil but I did not get on with it. My son saw him at London Bridge recently as he suffers like me. I could go back I know, and he wanted me to have a Dr I could call on where I live to make it easier for me. He recommended Leeds but have not been for years as it took hours and they did not change anything.
I feel I am moaning. I keep worrying my warfarin will one day be taken from me, that's why I am afraid to see anybody.
Ok, well my recommendation is that you go back to London Bridge asap and see Professor Hughes urgently, explain the drop in your warfarin to his secretary's who will understand your urgent need Then while you await the appointment you need to write out again all your symptoms and history in bullet points, AND any old paperwork from any where... once you get seen you can explain your needs and some very very firm letters will probably be written to Leeds... then your care plan out of London Bridge, advising Leeds will carry more authority! Believe me this is something that can be ironed out, you are nearly there with it, but you are unwell and tired which does not help. I wish you the best of luck with this. Mary F x
Hi Jade,
I understand your anxiety; I have been diagnosed with both seronegative Hughes Syndrome and seronegative Lupus, and as I am now feeling relatively well since starting Warfarin and Plaquenil, sometimes I wonder if it's all a fluke, and also hope I never have to change doctors!
I'm lucky to have a good local Rheumy and Hemo, who followed the advice of Dr Edwards at London Bridge with regards my not currently showing up positive on blood tests.
I hope you manage to find someone to have faith in, and as Mary F said, you're not alone. There are more and more of us out there who are not straighforward textbook cases, and awareness is growing. My Rheumy believes that someday there will be a different/more sensitive blood test which us seronegative awkwards types will show up on, so hopefully we will finally one day pass a test!
x
Thanks Mary, I did not drop my INR for the haemo I just cancelled another appt and will not go back. I saw her as I wanted to change back to fragmin as my INR is going up and down every other day. My GP dare not make the decision but the haemo refused point blank and told me she did not agree with Prof Hughes. The haemo was at my local hospital not Leeds. that GP has now retired. Now I don't know where to turn, I realise the prof will ultimately retire before I die and don't know what to do next. Also his waiting list is 5 months now as my son has just had to wait this long.
Ok well re read all of above, and ring up and ask to see Professor Munther Khamashta at London Bridge, if you explain how urgent it is, they will help you. Then this will give you the power to fight your corner for a better referral in Leeds, and or St Thomas'.. believe me I have been in your position ill myself with two ill children, so i do understand. Start on it tomorrow, afresh on a Monday. Best Wishes, Mary F x
Hi, having been diagnosed by proff Hughes and being sero negative, it was a huge relief to be taken seriously, i have been self testing my INR a couple of years now, and it has transformed my life, for the better, typical of Hughes patient my INR very volatile, but am able to keep it under control because of self testing, am grateful to Prof Hughes for supporting my quest to be more self managing of my symptoms, which has given me back a quality of life i had lost
Izzchick, how sad it is that we are desparate to 'pass the test'. So many conditions we would so want to be negative but after years of illness we end up wishing so hard for a positive. What cruel twist to this rotten invisible condition. Thank the Lord for Prof Hughes.
APsnotFab thank you for that. I love it that you refer to 'passing the test' I just wish I could. The haemo I saw made a meal of the fact that my GP had written I was 'persistantly negative' and wanted to change Prof Hughes regime. I think mention that I still had livido may have saved the day.The thing is I have not been tested for the antibodies since 2007. I have taken the view I need to keep my head down and not be noticed just incase somebody takes the warfarin from me. I once saw a rheumi where I live as Prof Hughes said I needed a local one, He was horrible and clearly did not agree with the prof saying 'I knew Graham Hughes when he was nobody'. Consequently I never went back there.
You have had a very rough trot, when we get handed exceptionally unprofessionally by some medical staff it can leave you feeling very under confident in striving for what you need. Believe me. I have been through this with bells on, both for myself and my children. I was left in a very dangerous position. I followed the advice form myself that I am suggesting to you, all of it. All sorted now - so my advice, above still stands, go back into London Bridge and ask for Professor Khamashata, with a phone call explaining how very urgent it is.. this will then iron out your care locally Mary F x.
Yes I think you are both right. I do need to go back soon. Guess I should make an appointment. I wanted to play down my worsening symptoms as my son has just been down to London Bridge, I wanted the attention to be on him. He spoke with the prof today who confirmed he had passed the test yey. The prof told him last week he thought unfortunately he was like his mum. He is overjoyed at a positve result as in his twentys people thought he was making it all up.
hi i have never tested positive for aps but in march last year i was told by rumo that i have all clinical evidence 3 prem babys ,stroke 2yrs in nov livido rash and blue toe after being taken off warfrin i ended up with clot in toe it was then the nero consultant put me back on warfarin and admmitted i have aps .on friday i rang rumo up to ask for copy off letter which states i have aps as now after all my health scares the dwp say i am fit to wrk full time .i am seeing my gp today for futher help on this matter i will let you all no what happens ..
Last year I asked my GP if I could come off warfarin and go back to fragmin while I went through meno as I feel my daily INR swings are hormonal. He sent me to a haematologist who, because I have had no major clots and my GP letter said I had not tested positive, wanted to reduce my INR lower than Prof Hughes said, told me no way could I ever have fragmin and I should never have had it to use when INR fell as INR of 2 was safe. I realise how important a positive tes is. I have Prof Hughes letter saying I have it but most docs only accept positve tests, which makes me scared to go anywhere incase they take warfarin off me. I have not been retested since 2004 to my knowledge, yet my GP wrote my tests remained stubbornly negative.
How do you know if you APS specialist is actually that?
Tired of this Merry Go Round....DOES IT END????
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