Hi there, I moved house just over a year ago and when registering with the local doctor it was found I had proteinuria. I've had a renal ultrasound and a renogram (with the radioactive tracer thing) and blood tests for kidney/liver function, CBC and glucose/diabetes and everything has been normal and I have no other signs of kidney disease. I've got an appointment with a nephologist in the new year but the other day my GP said he would just check auto-antibodies as well. Came back with positive ANA, negative ENA. He thought lupus was unlikely given the ENA and I have no skin rash. I've been reading bits and pieces online and I'm beginning to wonder if I am actually showing symptoms. I am always tired and struggle to get out of bed but I'm also a student so that's pretty much a given. I do get frequent joint aches, migraines and stomach aches and every now and then (maybe once or twice a month) I have a day/or a few hours where if I breath deeply I get a stabbing pain in my side. I didn't think much of these, until I was reading the symptoms online, as its normal for me. I really hate the doctors/hospital and they all seem like small trivial things that I've got used to and not worth wasting a doctors time. I don't have any skin rashes and as far as I am aware do not suffer from photosensitivity (although as a student I'm often inside). Do these sound like actual symptoms or is it just me over-reacting?
Also how do I know if the tiredness I feel is normal or not? For example at the weekend I might sleep for twelve hours and still be tired. Every day even if I've slept 8/10 hours I still struggle to get up. I work about 10-12 hour days usually 5 days a week. Sometimes I struggle to fall asleep (i think its stress) but once I'm out I usually don't wake up, always get 8+hours on a daily basis.
Obviously I'm not expecting a medical answer/diagnosis but just wanted to know if this sounds like lupus (even with a negative ENA) to a group who know what it is like to live with the condition.
As you probably know, lupus/SLE is only one of a range of related systemic auto-immune conditions. One of their main features is that they present with an incredibly varied and diverse clinical picture. Any and every body system can be affected and even when people share the same diagnostic label, their experiences in terms of symptoms may differ drastically. Conversely, the symptoms, everyday problems and treatments that an individual with another label (such as Mixed Connective Tissue Disease or even Sjogren's Syndrome) may be very close.
As a result, there are a lot of people here - including me - with other diagnoses but who can benefit from discussing our issues with "proper" lupus patients.
So the signs and symptoms you describe may not qualify you for a "lupus" label, but they do sound typical of the general class of systemic auto-immune diseases. In my own case, I got ill with signs of shortness of breath, joint pain and fatigue. I had a strongly positive ANA and anti-Ro and was given a diagnosis of Undifferentiated Connective Tissue Disease. Since then, my treatment has been very similar to what it would have been had I been diagnosed with lupus. Just as importantly, I've been able to benefit from the experiences, wisdom and kindness of all here.
For now, do try to keep a symptom diary and be persistent. If you aren't happy with how things are being managed, do keep pressing for better answers - most of us here find that it takes a long time to be correctly diagnosed.
Thanks for your reply, I know about a few other autoimmune but the GP mentioned lupus nephritis which made me go into a bit of a panic mode. I've been told by the GP to wait to see what the nephrologist says before going for a rheumatology referral as well so I'll just keep finding my way through the incomprehensible NHS system for the time being.
I have a strongly positive ANA but negative ENA (so far - and I’m 7 years into life as a Rheumatology patient). I also have hypertension and Hypothyroidism and trace blood in my pee. My diagnosis is primary Sjögren’s but this could change. I was originally diagnosed with RA.
As Whisperit says many here don’t have a cast iron diagnosis of Lupus but have some kidney involvement or other signs and symptoms that add up to a systemic autoimmune disease such as MCTD, UCTD or Sjögren’s - or other more obscure connective tissue diseases.
It is also possible to not have autoimmunity and have a raised ANA.
It’s good that you are seeing a nephrologist as possible kidney problems need investigation. All these autoimmune diseases can cause fatigue, renal problems, joint pain and even neurological symptoms. But then so can hormonal changes, student life and pressures of study as you say. I’m glad you are getting this checked out and fingers crossed for you that there is a more mundane reason for your proteinuria and raised ANA.
Having a ‘positive’ result from an ANA test occurs in about 95% of people with lupus and only about 5% of healthy people. An ANA test can also produce a ‘positive’ result for people with other related autoimmune conditions such as dermatomyositis or systemic sclerosis (scleroderma).
There are specific tests and criteria that are required in order to make a diagnosis of lupus which you can read about here: lupusuk.org.uk/getting-diag...
It is important to bear in mind that lupus presents differently in everybody therefore, it is unlikely for two people to share the exact same experience. Although skin involvement is common in lupus, not all lupus patients will experience it.
Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...
Have you spoken to your doctor about the pain you are experiencing?
We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...
Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...
Let us know how you get on, wishing you all the best.
I think my GP was pretty much ruling it out based on the fact I have no skin symptoms. He did ask me if I had joint pain and I did say yes but by that point I was trying to hide the fact I was having a mini meltdown so didn't go into much detail ( I was expecting the bloods to be normal as every other test had been and suddenly it wasn't). I didn't mention anything else as I didn't think about it at the time and was completely unprepared.
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