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Hughes Syndrome APS Forum

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Any body else find they didn't really feel major symptoms till after a Hughes-induced episode?

Eliza_E profile image
3 Replies

So, I used to get migraines in my teens but then reallly nowt that seemed a major issue till 3 miscarriages and a stroke after the birth of the Small; but, reading things here, seems like loads could be Hughie stuff...crap hearing, consatnt fatigue, etc etc. I'm Primary APS so no other serious diseases in he profile, and suspect pregnancy-related APS only. Is there a word on how to tell if this is the case?

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Eliza_E profile image
Eliza_E
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emmaj profile image
emmaj

Hi,sorry to hear of your losses and troubles, I swear the pregnancies triggered my hughes,and i too was told i would be fine outside of pg,please see a specialist other than just a pg consultant,and consult your gp to see if you can take 75mg aspirin as a precaution at least until your seen. I hope in your case you are fine out of pg,but i wasnt. I now have lapses of it but altho i always wasnt right and had mottly skin and other tell tale signs in himdsight, it definately got worse after pg. Good luck xx

MaryF profile image
MaryFAdministrator

Hi there, we are all different, but the condition is not a stable one and needs an eye kept on it both by the individual who has the disease and also by their GP, Consultant or all three. Sorry you have had such a difficult time with your losses. I hope you have somebody good monitoring. If you feel that not enough is being done, please do ask us for further guidance. I think many of us on here have had events which in hindsight when looking back, can make us see that from a certain point things were worse. Having said that with the right drugs tailored for you individually it can make a massive difference. Mary F x

Manofmendip profile image
Manofmendip

Hello Eliza and welcome

I agree with emmaj and Mary.

Do get a referral to an APS specialist; click on the link at the top right of this page to get a list of them.

Keep us informed.

Best wishes.

Dave xx

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