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Hi,

I am 51 years old and finally saw a rheumatologist a few weeks ago. I know I'm looking at this forum without knowing that I have Hughes but my blood test for anticardolon? has come back borderline positive. I have to have another test in 3 months and I know it's crazy but I'm hoping it's positive.

I've had livedo retikulous? since aged 10 plus loads of other seemingly unrelated problems. I just want a name for it.

I have suffered dizziness since childhood, every kind going, which no medication has helped. I suffer bouts of extreme exhaustion plus daily tiredness but learnt pacing myself years ago. I had 2 miscarriages but as they were at 5 weeks I didn't realize that they could be linked to this but luckily have 3 children. My memory is shocking and I can't remember names at all now, even though that didn't used to me a problem.

I suffer with what I call 3 day headaches where my arms go numb and have flashing lights on a daily basis. When my last child was born I lost the vision in one eye for half a day but put it down to stress although this hasn't happened since and I have had pleurisy on many occasions. Plus I hurt from head to toe ALL the time. I also have bouts of shooting pains behind my ears and in my arms at the same time, then it goes away again for months.

The rheumy said I have fibromyalgia and osteoathritis, which is a start and I have to thank a lovely physio for pushing me into demanding to see a rheumy.

I work full time but am self employed, so if I need to sleep for 18 hours, I can do lol.

My sister has lupus and sjorgrens and we have a family history of strokes and heart attacks at an early age.

The thought that maybe something like Plaquenil or even warfarin helping seems wonderful. I take gabapentin, tramadol & paracetamol but can't say that they really do much.

Sorry to ramble on but I'm just hoping that the jigsaw is finally coming together.

Thanks

7 Replies

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  • Hi there and welcome, you have been a good detective, and I am pleased that your physiotherapist has helped you to push in the right direction towards a rheumatolgist. Hughes syndrome, often comes with a number of other autoimmune conditions attached, In particular Sjogrens and thyroid problems, sometimes thryoid problems can also hide as fibromyalgia. Some people have this trio of disease plus also having Lupus. My own profile is this, plus also psoriatic arthropathy, We have to become detectives ourselves to get to the bottom of things and find the right consultant/team. Your family history is also relevant.

    If your diagnosis becomes more tangible the drugs you mention above may be an option for you. You need to make sure you are referred to somebody with APS knowledge, and we now have a database of medical professionals on the the HSF - which we hope will grow over time.

    Also by letting people know where you are geographically located will help others to come forward on here and let you know their experiences of positive medical care.

    All the best, and you will find great support on here. Mary F x

  • Hello rosiemay

    I second everything that Mary has said.

    Best wishes.

    Dave

  • Hi Rosiemay and a very warm welcome - so very clever of you to land on here and to use your instinctive powers to work out like many of us have done what sounds like is the most probable cause for your many symptoms.

    Like you I also had two children interspersed with three miscarriages but in the 1970's these were just explained to me as "one of those things"! I used to have 5/6 day headaches that would start gradually and build up and then wane off again. Like you these would be with pains in ears, arm and neck. Also in face, teeth, cheek and jaw. Eventually down the line I too was dx with Fibro which I have to say is a bucket that many people get chucked in when they dont know what else to put you in or when your body is failing tests as a condition is perhaps starting to manifest itself and has not yet got all its ducks in a row!!

    I went on to have a PE and then a Stroke before Prof Hughes dx Hughes and Sjogrens to add to my existing thyroid condition. Now more things seem to be popping up so the book isn't closed yet.

    Anticoagulants can have dramatic affects on somebody with sticky blood as it removes the sludge from the brain which it does not cope with very well. When Prof put me on a trial of Heparin I cancelled my speech and language appointments for my Stroke as I didnt need them anymore as it had made so much difference. Plaquenil takes much longer to work - months in fact so you must not put too much store on that to start with.

    As Mary says having a specialist APS Doctor is really important as not all Rheumatologists really understand the condition well and would not wait 3 months to start you on treatment with all your symptoms - its called treating the clinical symptoms rather than the blood tests!!

    Do keep us updated. xx

  • Hi,

    Thanks for your information and encouragement. I appreciate that I am not diagnosed yet and have tested negative for everything else other than the anticard thingy. It's mad to be happy to finally have someone say, oh yes one of your tests showed something!! even if it's borderline and may yet fizzle out.

    It would just be so nice to have an explanation for feeling rubbish for the last 40 years.

    Thanks again x

  • I echo the comments above as despite my dvt history, previous positive bloods, symptoms and family history I am now testing seronegative for Hughes. The Professor (Hughes) is confident of my diagnosis despite the negativity of some health care professionals. As Mary says, you have to play detective and it it is not necessary to have all the symptoms to achieve a diagnosis. I also test weak positive for Sjogrens so I guess it is like fitting all the pieces of your own puzzle together in order for the bigger picture to be seen.

    Do keep at it - ss the tv add says "because you're worth it!" :)

  • Read, listen & learn Rosie, I have been ill like yourself for best part of my life.

    Like yourself i have been diagnosed with fibro myalgia & osteo arthritus plus two boarder line lupus results.

    I do have a diagnosise of underactive thyroid & parathyroid problems, my son has the same.

    It interests me that your sister has lupus & sjorgrens i am suprised you have not had related illnesses ruled out before now.

    Like myself you are heading in the right direction, i am also awaiting to see a rheumy !

    It is a long tireing battle plus a very long journey but battle we must to get that all important diagnosis.

    I hope we are now coming to the end of that journey so that we can get the answer's & get the help that is so desperatly need.

    This is a great site Rosie not only friendly but a great learning zone, the administrators are more than healpful so dont be afraid to ask questions.

    You didn't say what rheumy your seeing but i hope you get some results, i'm awaiting to see one in Oxford......& waiting & waiting, yawn if you know what i mean :)

    It's a long road, phew puff pant but are we now coming to the end ? I hope so.

  • Welcome Rosiemay

    Glad you are getting closer to diagnosis. I wanted to mention that it is also possible to be diagnosed despite negative blood tests. I have sero negative Hughes. It is also possible to get a heparin trial to establish whether anti coagulation will improve your symptoms. The key is getting to the right specialist. The heparin worked like a miracle to me. The plaquinel takes longer to workbut when I look back there are loads of pains I used to get that don't happen now.

    I am glad you have your wedding to look forward to. I doubt anyone will be looking at your feet! I lost all my hair about ten years ago and now wear a scarf on my head. I tried wigs but felt really uncomfortable and self conscious. It was very distressing at the time but now I hardly give it a thought Do keep in touch and let us know how you get on. I expect that things will get a lot easier for you and it makes such a difference to have access to people who do understand. very best wishes Ann

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