Newbie with pains

Hi all,

I am from Australia and diagnosed APS (by blood tests) two weeks ago. I have been very ill all year following pulmonary embolisms on the 18th dec 14. Lots and lots of symptoms all this year and I finally got a diagnosis.

I have so many symptoms and pains, it is hard to know what to take seriously and what I just have to "put up with" as part of this syndrome. Tonight I started feeling very "unwell" with pain and tightness in the abdomen, now the pain and tightness is in the very upper chest as well. What symptoms should I report to my doctor?

Symptoms starting from about 35 years ago:

migraines (ongoing)

miscarriage

TIA

miscarriage

TIA

aortic aneurysm

pulmonary embolisms

TIA

diagnosis of APS from two blood tests with raised levels of antibodies.

I have been visiting this website quite frequently in the last week or so. Thanks for this great forum and any advice.

10 Replies

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  • Hi there and welcome, well done for finally solving the mystery!!! Please do familiarize yourself with the charity website, as the information contained on all the pages is up do date: hughes-syndrome.org/

    Also Dr Tim Godfrey in Melbourne is very up to date on Hughes Syndrome, I also enclose this link which also contains names:

    apsaction.com/

    Also if you own doctors are very good also do name them for others on here. Feel free to ask questions regarding anything, and thank for the great feedback, we are all unpaid volunteers on the actual forum and do it as we have had similar and care deeply about decent care and outcomes. Best wishes to you.

    MaryF

  • Thanks Mary. Melbourne is quite a distance from me, but promising that there are good doctors in Aus.

  • Hi and welcome to our friendly site where we try to help others with similar symptoms to ours;

    You now need a Doctor who understands APS really very well; that is an APS-Specialist.

    I do not know if you have talked to a Doctor already who will listen to you and understand your symptoms. It is important that you do not have high bloodpressure. I also wonder if you are on any anticoagulation drug for your sticky blood (too thick we have). You have had it for several years (symtoms started 35 years ago),

    I suggest you read "Sticky Blood Explained" by Kay Thackray who has this rare illness herself and writes about the diffrent symptoms we have. It is a good book(not the newest drugs in it but the symptomes are the same) to understand how it is to live with this illness.

    Best wishes from Kerstin in Stockholm

  • Hi Kirsten. I have my gp doctor who was the one that kept sending me for test after test all year as he knew there was something very wrong with me. He is no specialist in APS but knew what it was.

    I am on an anti-coagulant - Xalto, but I think they want to change me over to warfarin.

    Do you really think I have had it for 35 years? Wow, don't know what to think about that, will have to let it sink in.

    Thanks.

    Di

  • Hi and welcome to our friendly forum.

    I agree with the advice that Mary and Kerstin have given to.

    Dave

  • Thanks Dave

  • This is a great site with so much useful info. What state in Oz are you in? There is a huge difference in how you feel when you are properly anticoagulated. That said various odd symptoms do pop up from time to time and often how you feel is quite different to the next person.

    Admin here are very knowledgeable and helpful.

  • Thanks Ozchick, I am in Brisbane, qld.

  • Bit far away from me - I'm in Sydney. It's worth while hunting down a good specialist (must be one in Brisvegas!) It's good your GP is with it in finding out what's wrong but it needs someone to keep an eye on it and sort out the best meds for you. Warfarin didn't work for me, nor did Clexane so I'm on Xarelto. Looked after by a Haematologist and a Rheumy. Good luck with it all ;)

  • Thanks everyone for your comments. with time differences and going out last night, I have not had time to respond.

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