Knowing what you now Know, if you were just diagnosed today what would you tell yourself?

Join health unlocked and read, read, read. It will be okay. Keep your INR where it needs to be for you. Your doctor may not know how to treat this as many health care professionals don't. You need to be your own advocate don't rely on others to do the "right thing" they may not know how! You must be informed to keep yourself safe. Take one day at a time you can get through this... Remember to breathe❤️

12 Replies

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  • I would tell myself that with support from others who also have APS, we can live a life of quality.

  • I would find a Doctor who knows my symptoms from having had a lot of own patients with HS/APS and be treated with Warfarin and keep the INR stable (selftest) and at a rather high level to keep well.

    I have been nugging about this for at least 5 years here. Perhaps it was the last years i really understood how very important it really is.

    Thanks!

    Kerstin in Stockholm

  • I's tell myself not to expect all the answers to my questions!

  • Best one yet. I need to put your response on a sticky note on my forehead!

  • In addition to all that has been said I would get a self testing coagu check device, keep every Blood test, MRI, CT scan and any other test done on me. I would remind myself that I'm not alone in this journey.

  • Hold on,It's going to be a bumpy ride

  • Have a very open mind to doctors suggestions to certain things, and a very closed mind to others, and educate yourself to know the difference. This is far easier said than done . So far it only matters in two areas:

    1. Keep INR high enough ( usually close to 4.0 or at 4.0)

    2. Never stop anti coagulation.

  • 👍

  • I say chill out and don't get so stressed you have to take warfarin

  • I would not be as patient to neurologist who told me that my scan was normal (if I was 80) and my condition was all psychological.

  • Great post

  • Anything new to add/ help our newbies?

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