Sticky Blood-Hughes Syndrome Support

Possible Hughes?

Hi all,

Today I received blood test results back that put my IGg antibodies at 218 instead of the normal 0-10 range. This is the second high result I've had, although the first one -which was over 400- was taken two years ago and followed by a "normal" result 6 weeks later and nothing more was said about it, they said it was probably an infection although I was as well as I ever feel.

My diagnosis currently is chronic migraine (now 6 years, constant 24/7 headache) with restless legs and as part of that my balance is terrible- I walk using crutches/use wheelchair, and can't get far due to fatiguability of the muscles and pain in my legs- I have fatigue, brain fog, pain in my legs, random shooting pains left right and centre.

This third IGg antibody test was sent off after I was sent to Liverpool to be ruled out for Behcets for weird bumps on my shins- as well/instead of bruises- ulcers, joint pain, muscle pain, abdo pain, it was noted on my discharge letter the levedo reticularis around my ankles and on my feet, although I never knew that could mean anything, just thought I was blotchy all over! I have rubbish circulation and my hands and feet are always freezing.

The Rheum who tested me is attached to the Behcets National Centre in Liverpool so he wants me to see a different Rheum or Haematologist (and I've emailed the Hughes foundation to see if they can recommend... I've learnt that without recommendations you end up with someone who has no idea on the thing you've been referred for...!)

My symptoms may well have been worse when I'm on the pill (progesterone only as I have migraines) but I'm not sure if that's related?!

I was wondering if this fitted anyone else's story and if sounds like Hughes? I'm only 21 and I've not had any thrombosis history.

Apologies for the massive ramble!

9 Replies
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Hi there, you have told your history very clearly and I am glad that it is being suggested you see somebody with with APS knowledge which there is in the Liverpool area - other members on here have gone for diagnosis. We are also nearly completing a database which will provide more detail for members. Often with APS any involvement of the contraceptive pill makes things very bad, so there are a lot of clues here within you detailed account. If you contact Kate Hindle at the Hughes Syndrome Foundation, she will have some names for you. Keep us posted. Mary F

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Hi there.

As Mary says we are glad that you are being sent to a Dr who has APS knowledge.

The symptoms that you describe do indeed fit APS and are familiar to me and, I'm sure, to many of this group.

I hope that the Dr will perhaps give you a month's trial of fragmin injections to see if your symptoms show an improvement; for some people there is a radical improvement when anticoagulation is started.

Best wishes.

Dave

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sgtraf

In answer to your question Have I have got Hughes, go to the Hughes website and answer

the questions honestly you should get a good Idea of the result

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Thanks to all of you for your replies.

Mary, Liverpool is a really easy hour and a half journey so that would be ideal, I emailed Kate on Friday so I'm hoping to maybe have a name to ask my GP for a referral to when I go to see him at the end of the week.

Dave, I didn't realise that a dr might consider something more than aspirin in someone without previous thrombosis. It would be absolutely amazing to finally get some relief from the constant pain, particularly in my head- it doesn't respond to painkillers at all.

Sgtraf, I visited the Hughes foundation website to look at the symptoms etc, I didn't see any questions? I have almost all of the symptoms.

Thanks again for all your input, hopefully I'll get the ball rolling this week and maybe get some answers when I get my referral through.

Rachel

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Fairypies, I take lovenox and plavix which control my symptoms ( headaches, trouble thinking, etc), but have never had a thrombosis.

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That's useful to know, thank you! Is it likely that my GP will have me take aspirin until my referral comes through? I imagine it'll be 3-6 months before I get an appointment to see rheumy/haem as that's the general wait for referrals in my experience. I suppose it depends on where I go.

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My GP ordered the "heparin therapeutic trial" for me based on Prof Hughes' papers which I provided. It is just a trial. For me it made my migraines which were daily and severe go away in one day. Good luck.

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Oh wow, that's amazing that it made such a big difference to your migraines. I've had absolutely no luck with preventatives, so I have no relief from the pain and it sucks. Where can I find the papers that you gave to your GP? I'd like to take them to mine. Thanks!

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If you go to the HSF website you will find all of his trials and research. There will be some that will document the benefits of doing a heparin trial.

Let me know if you have any problems.

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