I had fever from January to April, about 101-102 F. I have ear thermometer. Somehow I thought that the temperature was in my brain, because I hadn't temperature from skin. On April I had TIA, and I asked for phosholipide-antibodies tested. (My grandmother had had lupus.) Because I have some symptoms. ACl was high 91 (should be under 15). Then in June I went to rheumatologist who said I have UCTD and he tested again. Acl was high again after 14 weeks. I have had also three miscarriages. Four years ago there were many MS symptoms and they took MRI but there were not demyelinisation so it was not MS. Also they found anything from spinal liquid. Can this fever be connected somehow to APS or vain infection or something like that in the brain, even MRI was clear four years ago? Blood tests are also ok. I have lots of memory problems, fogginess, fatique, nubness and so on. Would it be good to ask MRI again, though I think they won't do it (expensive)? Have you had fever connected to APS?

14 Replies

  • Hi are you on Warfarin, blood tests can be normal even if you have symptoms of Hughes syndrome. Test is not 100%

    Drs usually, hopefully diagnose Hughes by the symptoms.

    Blood tests for inflammation, can't remember what's its called, might be worthwhile, but I would see your Gp

    Good luck

  • Thank you daisyd! I am on babyasperin. Is it enough? Blood test for Huges was positive twice, but inflammation blood tests were negative.

  • If it was me, I would see your Gp taking along with you information on Hughes syndrome.you can find it on here

    not sure about temperature, I am not a Doctor but I would be happier if I was given Clexane or Warfarin.

    I would go today.

    Good luck you may have to fight your corner like a lot of us do!

    MRI will just show damage already done.

    Consentrate rate on previous medical history and blood tests

    Good luck

  • Hi Leenalina

    I agree with daisyd, you should see your GP and take lots of information from the HSF website.

    I had very similar symptoms to you and I certainly needed more than 75mg aspirin. I saw Prof Hughes who put me on Fragmin as a two week trial and then I was moved to Warfarin. I am now back on Fragmin and am largely sympton free.

    Best wishes and good luck.

    Dave xx

  • Thank you daisyd and Dave! In my country there is not so much information because this is very rare, even lupus is rare here. I try to look for information here, thank you! my next appointment to rheumy is in September.

  • Hi there, please educate you GP with our website: hughes-syndrome.org/ Hughes Syndrome does not go away, even if you test negative for a while, it is very important the your GP reassesses you, and refers you to one of the recommended specialists in your area from the same website. Please do let us know how you get on, and if you need any further information. I find that if I need to get information to my GP, the best way is to email the GP's secretary, after telephoning for the address, marked for the urgent attention of the GP! Mary F x

  • Thank you Mary! I have found very much great information from this website! I had a letter today that I have to go to lab tests again.

  • Which country are you in, so I can help you with a little more detail? Mary F x

  • I am in Finland. I think here is not much knowledge of this syndrome?

  • Hello, you could start by contacting these medical specialists: ncbi.nlm.nih.gov/pubmed/105... and another article: lup.sagepub.com/content/15/...

    Mary F x

  • Thank you! I will try to contact those in first link.

  • Also here as well: ncbi.nlm.nih.gov/pubmed/900... good luck, let us know if you manage find some good medical information for yourself:

    I hope your search is useful/Toivon haun on hyödyllinen!

    Mary F x

  • Thank you ( kiitos :)) Mary!

  • It is third time anticardiolipin antibodies were high. They keep testing every after three months. Next test is after six months. Is this necessary? No diagnosis yet. On Monday I had TIA again. I wonder if Acid. acetylsalic 100 mg in the morning and Dipyridamol 200 mg and Acid.acetylsalic 25 mg in the evening enough? I am very fatiqued. Is this because of APS or something else? I know nobody has answers and we are not doctors here, but I am just venting. Maybe you have experience. I wrote this morning an email to one of those doctors that you Mary linked. It is difficult since they are in other side of the country and another hospital area, but I decided to try because I did not get the diagnose yet on Tuesday on rheumy appointment.

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