Raynaud's that doesnt react to the cold?

[charlieab]

Just a quick rumination. I was diagnosed with raynaud's about 5 weeks ago, at the same time that my legs started tunring purple, joints clicking and aching etc. But am being tested for APS.

Anyway, I have not been 100% convinced by the raynaud's diagnosis, and so put my hand on ice for a couple of minutes. And there was no change in colour. They stayed the same reddy colour that they have been since all this started.

As I understand it, which isnt very well, your fingers should chnage colour in response to the cold with raynaud's? Seems more like some general circulation problem, perhaps arising from APS.

[MaryF Administrator]

If you doctor is testing you, make sure all three tests are done:

Anticardiolipin Antibodies (aCL)

Test

Sometimes referred to as Antiphospholipid

Positive in 80% of cases

Higher Levels = Higher risk of Thrombosis

Lupus Anticoagulant (LA) **

Test

Positive in 30-40% of cases

Cannot be used if patient is on warfarin

Beta2GP1

Test

This is a newer test, not routinely performed, but occasionally positivite when the above two tests are negative

Also please look at our recommended specialists in pinned posts. Whenever I get a new symptom I photograph it in case it disappears before I get back to the GP.

Also please do make sure the GP tests your vitamin D, B12 and Iron plus a Thyroid test.

MaryF

[charlieab in reply to MaryF]

Thanks a lot Mary. They have tested for all three apls and I should get the results this week. I know my B12 is OK but will ask about thyroid and vitamine D. Though Ive been taking vitamine D suppliments and getting quite a bit of sunshine, so should be OK on that I guess. Ive even started eating fish after decades of being a vegetarian.

[charlieab]

Thanks a lot. Apsnotfab. What you describe does sound a bit like what I experience. Taking photos to appointment is a great idea. If Ive been walking around - even from waiting room to the doctor's room - then the purple greatly diminishes and I can end up sounding like Im exagerating things. Or even like a hypochondriac, which i think is the initial diagnosis for many people with autoimmune conditions!