Hi. It's a long time since I posted anything but I do read people's posts and find them very interesting. Still no diagnoses despite worsening of symptoms and butterfly rash. However I've just had a second positive lupus anticoagulant test (DVV test ratio). Can anyone throw any light on this for me, please? Is it Hughes Syndrome?
Lupus Anticoagulant: Hi. It's a long time since I... - LUPUS UK
I can see by your past posts that you have had a confusing and frustrating time getting a diagnosis. All of these lab tests are taken in the context to of the patient. As an example, a random positive lupus anticoagulant test in a healthy patient is not the same as a positive test in a patient with symptoms suggestive of autoimmune disease. It is very common for these diseases to evolve. Rheumatologists have many other signs and symptoms they look for. The best thing is to ask whether he thinks you are showing autoimmune tendencies. That is the big distinction at this point. Feel free to PM. I presented similarly to you thirty years ago.
Thank you for replying, Kayhimm. I have no symptoms of lupus anticoagulant, of those I've read, apart from premature births. Currently I'm waiting for an app with an immunologist for an immune system that's gone haywire. At the moment all vegetables and fruit and even gluten free bread is making my tongue swell, which leaves me with a very limited diet. It was a rheumatologist who found I was positive LA and asked my gp to do a follow up test at least 12 weeks later. As it happens it was 6 months later. I have several autoimmune diseases
That is good you will have an immunology consult. I did not realize you had already were diagnosed with autoimmune disease. It seems common to have many hypersensitivities and allergies with autoimmune diseases. Keep us posted. Hoping you feel better in all ways.
Thank you so much, StickyBloodMentor. The other two tests were carried out but we're normal. Only 're DVV test result was abnormal, the second to be positive
I had dismissed any thought of having it tbh and assumed the first one was a blip. Apart from lifelong migraines I don't have any symptoms of LA so was sure I wouldn't have it. However my extended maternal family are stroke prone
Have you been given any advice/treatment to better manage your symptoms from your doctor? We published a booklet on lupus and skin, if you haven’t already; you can read it here lupusuk.org.uk/wp-content/u...
Antiphospholipid antibodies are present in about 50% of people who have SLE, according to The Lupus Encyclopedia. ‘Hughes Syndrome’ is now more commonly known as ‘antiphospholipid syndrome’. You can learn more about this in our ‘LUPUS: and Blood Disorders’ factsheet: lupusuk.org.uk/wp-content/u...
Please keep us updated, wishing you all the best.
Thank you, Chanpreet_Walia, I will take a look. Following bouts of severe eczema I’be been seeing a dermatologist, too
Hi folks, you all are talking WAY over my head now, but I have wondered for quite some time what is going on with me. I have researched the gamut of diseases from Lupus, SLE, to MS. My blood tells me nothing. My doctors don't really take all my different conditions serious bc it's a different doctor for everything. I honestly feel like it's all related. (Neuro for Migraines, Rheumy for Fibro, arthritis-which doesn't really listen to me, Ortho for hips, etc, etc etc etc). In summary I have symptoms of SLE, but no bloodwork results to support ANYTHING. No positive ANAs (although my sister tests positive every time). I wonder if my being a carrier of Hemophilia combined with the fact that in 8th grade I was told my "platelets stick" are countering each other somehow to make the bloodwork to come out normal. I have no idea why I was told that bc I can't get the records from Shands. My MPV tests a little low often, not bad though. Here's my SLE symptom list:
1. severe fatigue
2. joint pain
3. joint swelling
: Yes (I have almost daily migraines)
5. a rash on the cheeks and nose, which is called a “butterfly rash”
: Unsure, not necessarily a butterfly, but flush a lot
6. hair loss
: Yes (taken Biotin for years to help)
: Off and On, more off as I age
8. blood-clotting problems
: Yes (I'm actually a Hemophilia 9 carrier and had to have a hysterectomy bc of it.)
9. fingers turning white or blue and tingling when cold, which is known as Raynaud’s phenomenon: Some but not diagnosed
10. sun sensitive: YES, feels like fiberglass in my back and I want to pass out
I have been diagnosed with Fibro, Migraines, Hip Dysplasia, Scoliosis, Myositis, Mild Hypothyroid, Osteoarthritis in many joints, Hypermobility, Sensitive Liver, and other stuff.
I only know what Dr Google tells me, but this seems like a good summary arthritisresearchuk.org/art...
Interesting, whisperit, thank you