Diagnosis

Hi everyone

I'm 36 years old and recently admitted to hospital with multiple PE's. Whilst there the rheumatology consultant suggested I may have APS and ordered tests. Unfortunately it now appears the tests or results have been lost and we a back to square one! I have an appointment to see her and have the tests repeated at the end of August! Could anyone offer any advice on the symptoms I am experiencing and could they be linked to APS? I have a low platelet count, hairless, frequent mouth ulcers, general fatigue and a feeling of not being able to think straight. Any advice would be greatly appreciated,

4 Replies

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  • There are many symptoms and we are not all affected with the same. But general fatigue and a feeling of not being able to think straight, or brain fog as we call it, are commonplace. PE's too.

    Best of luck

  • It is utterly crucial that the tests are repeated, and you need to perhaps write a short polite letter mentioning your disappointment that the test results have gone AWOL. Insist on urgent retesting, and while they do these blood tests, (and please do them in the hospital so the samples do not hang around). Also get them to look at your Iron (Ferritin, D and B12), plus a Thyroid Panel, and just in case an ANA for Lupus. It is good however that it has occurred to them to do this. Please do also fully familiarize yourself with the charity website which carries excellent up to date information.

    hughes-syndrome.org/about-h...

    hughes-syndrome.org/ MaryF

  • do you live in the UK? US?

  • I'm in the UK Luisa

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