Maybe Lupus after all

Just got back from haematologist who has confirmed Hughes Syndrome and is saying bloods show Lupus even though my new rheumy earlier this month said I was too old to be diagnosed with Lupus.... am I confused or what? The consultant today wants more bloods done and see me in 3 months when he may refer me to St Thomas' depending on results. He also mentioned that MS may be an outcome but said he wasn't saying it was.

My head is spinning.

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  • Hi Jonsey1

    Im sure your head must be spinning, its a lot to take in, the only positive I would say is that at least you'll know what your dealing with.

    If your haematologist (spelling) does refer you to St Thomas' it's a specialised Lupus clinic & they know what their doing, I attend that clinic myself & have done reguarly for over 6 years.

    I wish you well

    (((lupie hugs)))

    Trace x

  • it can all be very confusing when things are thrown at you like that. Hughes Syndrome (anti phospholipid syndrome or sticky blood .... all the same thing) when diagnosed have proved that people who were original diagnosed with MS did infact have this and not MS. I am assuming that your consultant has carried out an ANA test, although a positive result normally means lupus, but a weak reading can also be obtained through having fibromyalgia. So at his stage it is all supposition and worrying about it will not change the result, but can make you feel worse ..... it's kinda like sitting in a rocking chair ....gives you something to do but gets you nowhere. Keep your spirits up, it may take some time but St. Thomas's is recognised as the UK lupus centre so they will give you all the answers you need, but until then try to relax. God Bless

  • Thank you for your replies.

    It has just been a roller coaster year of yes, no or maybe, January GP said may be lupus, Feb rheumy said no, March another GP said hughes, April my own GP said not hughes, May rheumy said not Sjogrens, Sept positive test for hughes, Dec new rheumy says too old for lupus but I have got Sjogrens and then haematologist said definately hughes and talking as though I have lupus from blood results, at least 3 weakly positive ANA and positive dsDNA and then mentioned MS. Now waiting to see what he says in April next year.

    I know the treatment is the same but it would be nice if they could all agree on at least something.

    Sue

  • Hi sue, I can understand how confused you must be, but at least if your getting the treatment something good is happening. I understand though you just want to know what is wrong! Hang on in there and hope your feeling better soon, take care, Mandy x

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