APS, what's usual & what's not-HELP!

Hi having had a stroke at 47 just over a year ago my GP ordererd various tests & picked up my blood was not right. After more tests I was reffered to a heamatologist who confrimed APS! I am currently on various medication including Clopidigrel & my heamatlogoist is considering warfarin, I also have an appointment to see a rhuematologist in December. I was hoping someone could clear up some queries for me please. I seem to feel really well for a few weeks then all of a sudden dip, I ache, feel tired & generally crummy! I can also wake up feeling fine but by the end of the day can hardly walk up the stairs due to the pain, is this usual. I am lucky enough to be able to work full time, I say lucky as my Husband has been made redundant & don't know what would happen if I was not able to work! What with work & a livley & fab 5 year old son to look after rest can be difficult however it does not seem to follow that if I have had a busy day the aches & pains will be worse, is this the same with other people. I thank you for reading my post & apologise if it has come through twice! Thanks mummyb08.

6 Replies

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  • Hi there and welcome, if in the UK please look at the list of Specialists hughes-syndrome.org/self-he... send this to the GP and also the charity website, highlighting to him or her the list of specialists, that way you will get help and your GP will also find it easier to manage your care. MaryF

  • Thank you.

  • Hello and welcome.

    I agree with my colleague Mary.

    Best wishes.

    Dave

  • Hallo, I agree with Mary and Dave about having an APS-doctor.

    As you have a diagnose now which is good, the thing is to find that Specialist as there are so very few doctors that know this illness. Tell us where you are from and it will be easier for us to find your help.

    The symptoms you have described are very usual. When you get your APS-doctor and the best medication you will feel better.

    God Luck and please stay on here!

    Best wishes from Kerstin in Stockholm

  • The kind of ups and downs you describe are often enjoyed(? haha!) by autoimmune patients. As I understand it, the immune system will kick on and off depending on the environment, and, in our case, how thick or thin our blood is. So, that tired, achy malaise which most people associate with an oncoming bad cold or case of the flu we autoimmune patients get to experience at random intervals.

    But don't despair that this is going to be a new, permanent normal. When we find the right medication, and therapy level for us we usually recline back into a more or less normal life.

    But since we're all different it is more likely you will find that "Goldylocks Just Right" therapy if you consult with a doctor who is experienced treating APS.

    Good luck.

  • Thanks for your replies, I am slowly getting out of panic mode I think! & it is reasuring to know what I feel is linked to APS in the begining I would be afraid it was another stroke or sonething else. It is nice to know there are others out there that understand

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