Hi, I have a 16-year-old daughter who is having all sorts of tests to try to figure out which autoimmune disease she is heading towards. Blood tests are showing a high Kaolin Clotting Time, high RVV and high RVV + phospholipid. We are still waiting on the results of antibody tests.
Is anyone familiar with these results and able to tell me what they might mean? I realise you aren't doctors, but value knowledge of your personal experiences. 
OK, it's a bit of a long story which I will shorten....daughter started with chest pain 3 long years ago, then arthralgias around most of her body, then stomach problems, dizziness, fatigue, visual disturbances, flushing, difficulty dealing with warm temperature, numbness and tingling, migraine headaches. We went to all sorts of specialists - rheumatologist, immunologist, neurologists, gastroenterologists, paediatricians, etc. After two years she was diagnosed with Chronic Fatigue, but I knew there was more to it than that. After 2 years and 8 months we got the further diagnosis of POTS, Postural Orthostatic Tachycardia Syndrome. Then we went back to the rheumatologist, as she had another ANA test which showed a positive 1:160 speckled ANA result. He tested her for all sorts of things, and these test results have come back as above. Both the rheumatologist and I are convinced she is heading towards some sort of autoimmune disease, we just don't know which one. I have Hashimotos and Psoriatic arthritis. The rheumy doesn't want to give her anything. I, on the other hand, would prefer to try some treatment, like Plaquenil, to see if there is a positive response to it. I don't like this waiting until something full blown happens. I'd rather hit it hard now. I was lucky to have the psoriatic arthritis treated early, and I'm a lot better than others who chose to go down the natural therapies path first (but that's another story).
I have Sero negative Hughes Syndrome, (Systemic Lupus for decades but only just passed the test), Sjogrens, Psoriatic Arthropathy and a slow thyroid, it sounds as if you are on the right track, but check out the Sjogrens, Lupus and thyroid issues alongside Hughes Syndrome, as it sounds as if you have a good rheumatology detective on the case. I also have a speckled ANA pattern result and a positive for Systemic Lupus. My daughter has Lupus and Hughes, and my son Hughes and my eldest chronic brain fog and severe fatigue which has altered rapidly on Aspirin and LDN! Keep us posted, and welcome by the way. MaryF
We live in New Zealand.
There may be some names on here you could track down: journal.nzma.org.nz/journal... ncbi.nlm.nih.gov/pubmed/153... to put you in the right direction: MaryF
IHPA:
I hope this link works, a recently published article in the medical journal Lupus describing POTS due to APS
lup.sagepub.com/content/ear...
That's interesting. She has livedo reticularis, which used to only be on her legs but pops up on her arms as well. The rheumy left a message today to say there is nothing abnormal in her blood tests, yet there are those high clotting times, so I'm confused. And her ANA has gone from positive speckled to negative. This is so frustrating. Why do blood tests and then say that blood tests outside the normal range are nothing to worry about? I wouldn't be worried if she didn't have symptoms as well, but she does!
I agree. No problem getting aspirin, but who do I get to prescribe her Plaquenil? Oh well, I have emailed the rheumy to ask why he won't do anything, and will just have to wait for the reply and take it from there.
IHPA
Just remember Plaquenil takes time to work - there is no fast results-it can take many months with some of us . but if it works for you it is worth it --jet
High diastolic pressure?
Any relation with having APS and high creatinine levels?
Blood Clotting Disorders and Lupus??
My INR is too high !
