Appointment tomorrow: Hello :) My... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Appointment tomorrow

stillwaiting profile image
10 Replies

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.

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stillwaiting profile image
stillwaiting
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10 Replies
MaryF profile image
MaryFAdministrator

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

Manofmendip profile image
Manofmendip

Well done and good luck. Dave x

jetjetjet profile image
jetjetjet

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

stillwaiting profile image
stillwaiting

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

Fingers crossed :)

Lynn.

Jillymo profile image
Jillymo

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. :)

SueLovett profile image
SueLovett

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

GinaD profile image
GinaD

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.

stillwaiting profile image
stillwaiting

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?

Lynn.x.

MaryF profile image
MaryFAdministrator in reply to stillwaiting

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

MaryF profile image
MaryFAdministrator in reply to stillwaiting

The disorders do frequently go together: ncbi.nlm.nih.gov/pubmed/774...

MF x

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