Hi, im new here...

[Kate16]

Hi, i was wondering if anyone could help : ) I was diagnosed with me.cfs three years ago and have been housebound since then with extreme fatigue. Ive recently started to develop other symptoms like blood spots on my arms and legs, bruising, frighteningly large menstrual clots (sorry to be so graphic) increased migraines and burning, pins and needles on my legs as if theyre on fire. I wondered if this sounds anything like Hughes syndrome. I also have a high ana reading (1:640), i think a malar rash, and often a painful tongue muscle.

Ive asked for an Antiphospholipid antibody blood test which we're doing this week.

Id be glad of any advice/thoughts.

Many thanks, Kate

[MaryF Administrator]

Hi there, good you are being tested, make sure they do all three tests. 1. Anticardiolipin Antibodies (aCL) 2, Lupus Anticoagulant (LA and 3. Beta2GP1

Not that unusual to have Lupus with this also. While the testing is at this stage, it is important to do your Thyroid tests, plus vitamin D, B12 and Iron, as those levels all need to be looked at. It also helps to have a Hughes Syndrome/APS specialist. Let us know where you are located, so we can help with that if we can.

MaryF

[Kate16 in reply to MaryF]

Hi Mary,

Thanks for your quick response! My Dr only seems to be doing one test- she called it a Lupus Anticoagulant test. I will mention the other two.

I live near Stirling and will be seeing a Rheumatologist at Forth Valley in two weeks to talk about the possibility of Connective Tissue Disease. Would a rheumy deal with APS too?

[MaryF Administrator in reply to Kate16]

Tell you GP it is best to do all three and refer to one of the ones we recommend, the list is in Pinned Posts, on the right hand side of the forum. MaryF

[Kate16 in reply to MaryF]

Thanks Mary, thats a great help.

Kate

[charlieab]

Hi Kate

I'm afraid I cant be of any practical help, as am also being tested this week or next week. But just wanted to wish you luck.

[Kate16 in reply to charlieab]

Hi Charlie,

Thanks, thats so kind. I wish you luck too. Its a rollercoaster we're on isnt it?

[charlieab]

Thanks. And sure feels like a rollercoaster. Im pretty much ready to get off and try a gentler ride. That or go for a pint!

[Wittycjt]

Welcome!