Seronegative APS and new to the forum!

Hi all

I am new to the forum, recently (1 year ago) had a seronegative APS diagnosis based on a long medical history!! Currently on 75 mg aspirin daily and feel like I have been given my life back!! Debilitating migraine with aura, poor circulation, brain fog, pins an needles, dizziness, weakness, severe pre-eclampsia, thrombocytopenia, premature delivery then DIC , possible MS(not), Menieres, and a shocking memory! All dramatically improved for the sake of a baby aspirin!! Feel angry that it's 30 years too late though !! Still I should be grateful, better late than never eh !!!

7 Replies

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  • Welcome the group hope you find it as help as some many of us have already.

    Have a great christmas

    Clare

  • Hello there... I am 46 and only recently diagnosed, symptoms back to teenage years, join the club etc etc Mary F x

  • Hi

    This is such a great forum full of lots of support and suggestions so glad you found it. It is so nice to know we are not alone as I too am seronegative and it took a lot of heartache and pushing for referral to London before I was diagnosed. Aspirin has stopped my migraines too and a lot of my other issues, my identical twin sister is still suffering badly and I am really pushing the local hospital to get her up to London (I made the consultant read my London letter) so she too can be diagnosed with seronegative.

    Rosemary

  • Hi Rosemary

    Thanks for your post, I was really fortunate to have a local Consultant who after consulting with Dr Hughes team gave me a diagnosis, so it's not always necessary to go up to London. But I do think more awareness would help with diagnosis at local level. I have to admit that I trialed the aspirin for 3 months to see what effect it would have on my migraine before going to the docs,it was so dramatic it gave me the power to push for tests and investigations, which although negative, due to clinical history it was supportive of APS diagnosis. There is still a lot of debate over testing techniques and sensitivity of these tests. And as I have read on other blogs, results can change over time.At the end of the day,we all know how we feel and if see improvements in symptoms with Aspirin, or other meds, then that is a result that actually means something concrete.

    For me I've seen improvements in Migraine,digestion/constipation,thinking processes/memory,warmer hands and feet, skin tone ( I have rosy cheeks for the first time in my life),no gall stone bouts since starting aspirin, and less skin tingling sensations.

    I would like to know from anyone what there experience is regarding Migraine. Mine are dramatically reduced, but when I do get one they are the most severe type, often lasting longer,more painful, starting off again after a short lull, more with aura symptoms i.e. blind spots/ scintilating flickering lights, and post-migraine- I get recurrance of skin tingling sensation, and leg jerks for a few weeks afterwards. What are your experiences? I would appreciate any comments.

    Many thanks

    Carol

  • hi Carol, I was on aspirin for several years and still getting migraines. They didn't stop until I took anticoagulants. Unfortunately, by then some brain damage had occurred. Perhaps you should discuss this with your doctor and see if you should be on anticoagulant therapy. Best wishes, Stella

  • Hi carol

    welcome and glad you found us. Sorry you suffered so long without help, all too familiar a story on here sadly.

    As Stella says maybe migraines would improve with further anticoagulants, could be warfarin would help. I recently started plaquenil and have found lots of symptoms improving. So their are ways the docs can help. Glad you found helpful docs locally and that they will liase with st thomas's.

    Hope you feeling well today!

    Happy new year.

    Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

  • Many thanks for all your comments, I appreciate any input and support you give.It's just so nice to know you understand!

    With thanks Carol x

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