Paul_HowardPartner3 years ago

Hi j7b7r6 ,

The lupus anticoagulant blood test is one of three for a condition call antiphospholipid syndrome (APS or 'sticky blood'). You can read more about this test and how APS is diagnosed at aps-support.org.uk/about-ap...

j7b7r6 in reply to Paul_Howard3 years ago

Thank you - I had a look at that over the weekend and it explains a lot more than my letter did.

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Hidden3 years ago

Ugh! That’s frustrating. You have to wait a year?

Idk if this is the same reasoning, but my tests come back positive as well, but the rheumatologist said that the last set of tests, after several positive ANAs, didn’t have high enough numbers to confirm as a positive lupus diagnosis. So for now they are calling it UCTD/Latent Lupus (or prelupus?) and running more tests and keeping an eye on it in case it goes into a solid Lupus diagnosis. Also starting to test me for Sjogrëns. Then, idk, does the UCTD change to a MCTD diagnosis? So confusing for us non-medical people just starting to try to figure things out, isn’t it?

Idk if that helps at all, but I hope you start having some luck. Worry is the worst part, so having a solid diagnosis of what is going on gives some relief in that you can move on the the ‘let’s figure out my best options’ phase. Plus, I always feel like an idiot when people ask me what’s going on and I don’t have any definitive answers because things (suspicions) keep changing. Lupus to Ankylosing Spondylitis, back to Lupus, now the UCTD yo testing for Sjogrëns, then does it become MCTD 🤷🏻‍♀️. Ha, ha, if would drive others batty trying to keep up with us🤦🏻‍♀️. I just tell people ‘idk, they’re still testing’.

Best of luck to you! 🙏

loopy4me in reply to Hidden3 years ago

Yeah that’s an excellent point concerning trying to answer people when they ask, “What’s wrong with you”?. I try to make it simple that I have an autoimmune condition similar to lupus. I suppose they are concerned that I may be contagious. Some people have told me they googled lupus and are ok with me hanging around them since I am not contagious. So I have learned to just tell them I have a form of lupus and they get the point . As lupus carries some basic understanding within the population. If you get too specific and always try to pinpoint your diagnosis and change it periodically, they think you are either wishy washy or making stuff up.

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Hidden in reply to loopy4me3 years ago

I totally agree.

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j7b7r6 in reply to Hidden3 years ago

Unfortunately new appointments move at a glacial pace, up to six months waiting as routine and it was 10 months for the rheumy appointment as they managed to pick my two weeks out of the country for the first offering although that wasn't their fault. Realistically by the time I get the new neurology appointment then the follow up rheumy it will be a good 9 months I'd expect. The APS result was a bit of a surprise, I guess I'll have to discuss with the GP what I've since learned about the condition, if for no other reason to settle my mind as it looks like treatment is reactionary rather than preventative.

I knew I wasn't getting a lupus diagnosis, I was told that on the day of the consultation - I simply don't fit with classical physical symptoms. The consultant even suggested that my earlier anti- dsdna results were likely a false positive as he didn't rate the neighbouring NHS authority that did them - he got that wrong, they were confirmed by his own labs. What I was hoping for was something along the lines of UTCD and at least an acknowledgement that there is something wrong in autoimmune terms as that would be start.

I don't understand the lab results anymore - they only seem to be used on a very selective basis. Some say that positive anti-dsna is the gold standard especially with positive ANA, my results are termed "just one of those things". My ANA is often 1:2560.

I can empathise with what you said about trying to get other people to understand. All last week a number of people asked if I was OK as I clearly wasn't looking well - they know I go back and forth for hospital appointments but all I can say is...."they don't know"...

Thanks for your reply and hope you move forward yourself.

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KayHimm3 years ago

You have a confusing set of lab tests and symptoms. I think the neurologist could be helpful. The anti-phospholipid antibodies - the lupus anticoagulant is in that group - can cause a variety of neurologic symptoms. The antibodies come and go. They will likely re-test you. It will be interesting to know if the neurologist believes your neuropathy is, in fact, related to the aPL. Cause and effect is not always clear. I have one the anti-phospholipid antibodies and UCTD and the thinking is my neuropathy is likely caused by autoimmunity.

Hope you get clarity with this soon.

K

j7b7r6 in reply to KayHimm3 years ago

I had never even heard of aPL until last week and I don't now even know if it was tested for previously on a regular basis. My last local neurologist blood tests results reported a negative but only mentioned of the antibodies tested and that wasn't the lupus anticoagulant. I'm not sure if it's helpful or just further confused the issue. I know now it's an autoimmune disorder in it's own right but is the primary problem or secondary to some overlap condition or yet to be diagnosed other problem? And why I am seeing a neurologist again when I've just seen a rheumy who specialises in systemic autoimmune disease? Aaarrrggh!

Unfortunately I'm sceptical and dubious of neurologists. To date I've found them incredibly dismissive of anything they don't have knowledge of or interest in and intimidated by the status of anyone higher up the food chain that has seen me previously. I mentioned all the skin issues to the last one (when asked for general problems) and the response was "well go and see a dermatologist". That same Consultant gave me about 30 seconds last week and has suggested discharging me in 12 months because "the painkillers appear to be helping".

I'm just lucky that I have a GP who referred me independently to the rheumy at the QE which is where my next neurology review will be. Without him I'd effectively be out of the system this week save for my 2020 discharge from the local neurologist.

Thanks for your reply and good luck too.

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KayHimm3 years ago

I really do understand why you would be completely confused and frustrated. Honestly, your doctors are too. These illnesses, particularly when they involve the nervous system, are very hard to diagnose.

Making I can help with the neurologist referral. It sounds like the rheumatologist sees your symptoms as involving the CNS or PNS and wants that confirmed. Although lupus can involve the nervous system, you do not have the other signs of inflammation that makes him feel lupus is the most likely. Things evolve. Right now the neurologist is the only one who can properly evaluate what is going on with your neurological problems.

I think it is not helpful to think in terms of hierarchy. The rheumatologist is not above anyone because of his knowledge. It is just different knowledge. Neurologists have an entirely different training - very tough - and their expertise is often needed with autoimmune diseases. They can be nerdy and some mind think arrogant because of their knowledge. But with your blood tests and symptoms, it sounds like the neurologist will help to understand your illness.

Yes, the “I don’t know” is frustrating. We all get that and many of us get frustrated. They honestly don’t know. They often have to continue with further tests and also watch you over time. You could ask what you think their best explanation is about a particular symptom or ask if they are certain you don’t have an illness you fear you have. You want to get to their reasoning, not just yes of no.

I have one of the aPL and low level CNS involvement and autonomic neuropathy. Feel free to message me if I can help with the specifics. It is a beast to come to any understanding about. No wonder you are confused.

When is your appointment?

K

Lizziequink3 years ago

Hi, blood tests taken prior to an operation last November highlighted that I had Lupus Anticoagulant although tests taken at my local hospital to pass the hospital that did the op (to save time) didn't highlight the issue and actually delayed the op. When I passed the information on to my rheumy, he said he hadn't been sent that information so dismissed it. I know that LA doesn't mean you have Lupus but neither does it mean you haven't got it, and my GP was concerned enough to write to him to explain that I was showing all the symptoms of Lupus. His argument was that I'd never mentioned some of the symptoms before, totally ignoring the fact that I hadn't seen him for a year and I hadn't mentioned them because I hadn't seen him.

As Paul said, there is an awful lot of info online about the condition. Hope you get the support you need.