Sticky Blood-Hughes Syndrome Support
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Appointment tomorrow

Hello :)

My speech was so bad today I rang the hospital to ask if they had had any cancellations for rheumatology clinc and they said yes - tomorrow!! So I get to see specialist 2 weeks early. I am so so nervous. Still undiagnosed but have a positive anti B2 glycoprotein IgG of 67 (lab leveis 0.10-6.9). My memory is dire at the moment and I'm having a lot of chest pain. My right hand has been too weak to hold a drink.

Any tips or advice for the appointment would be appreciated.

10 Replies

Hi there, well done on being proactive - it does produce results normally. Bullet points of your medical history all events, medications and other doctors seen, and full current symptoms. Best of luck, let us know how it goes. Mary F x


Well done and good luck. Dave x


take someone with you that understands , your questions , you info ,your concerns etc. another set of ears and that person can take notes for you also -- it is a huge help - also it will help you uneasiness . a calming thing ------------- it works believe me - i have been down that road --- jet


Thank you all so much for replying. I have done all you say.

Fingers crossed :)



Yes very well done I'm pleased you got in early. If your going on your own write your questions down, try not to be nervous this is your chance to speak out so you need to be heard.

I hope the Rheumy is a good listener & you come out with good results. :)


As Mary says write down your medical history.

Bullet points can be put in order of worse to least symptoms.

Hope it goes well x


Take a series ( if your chest pain permits,) of those deep calming breathes while in the waiting room. In to a count of7; hold for a 3; exhale to a count of 12. Great exercise to calm racing thoughts.

Let us know who things go.


An update:

Hello everyone and thank you so so so much for all your best wishes and support.

The appointment went well. The dr said he needed to discuss my history and bloods with a colleague. They both came back and said I have Hughes syndrome. I cried (no tears - they're questionning sjogrens!) with utter relief that I have answers. I lost my babies 18 years ago - a long time to be awaiting answers!

I have 10mg warfarin today and 5 on Wed and Thurs and then a morning in hospital on Fri for further tests etc. - was told to bring a book - it'll be a long day!

I can not thank you enough for your help. As soon as I understand more I think I will be helping to raise funds/ awareness etc.

Does it sound strange to be told you have such a horrid illness, yet feel relieved to have answers?



Well done for your personal efforts with this, I am pleased you are having good medical care. Let us know how it all progresses. Mary F x


The disorders do frequently go together:

MF x


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