Hello, I want to provide a clear history of facts. Last December, I experienced joint pain, my hands were burning for no reason, and my joints were cracking. I felt really run down as well. I ordered my GP (where I had to pay for private referral to rheumy...) to send me there and test me for Sjogren's. I had the following tests done:
I complained to my dentist about my dryish mouth at night and told him I went to rheumy already but he sent me to oral medicine anyways. They tested CBC, B12, ANA, ENA, and some common antibodies against various organs. All were normal or negative, except my B12 was raised and ANA was 1:80 homog.
I get sunburn which is red after a few hours in the sun, my mother, brother and father all sunburn red. My father issues with dry mouth and eyes for 10 years. For all I care, he definitely has something autoimmune going on with that dryness. He just does not care about diagnosing. I remember he frequently complained about back pain, and various joints issues. He also seem quite tired most of the time. I am going to call him up and ask him about this because I feel like genetics is catching up with me at age 25.
Any advice is appreciated. I am in London, UK
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darkknightlt
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But it took me years of feeling like poop and making a link between my dad having rheumatoid arthritis, a brother with thyroid disease and 1 who is celiac.
My symptoms starting after giving birth 14 years ago. My bloods don’t tell a lot. Just recently I visited a specialist privately and I think I will make progress here without just looking at my bloods. He confirmed dry eyes after testing them , no one has ever done that. He also looked at the physical appearance of my skin.
It really is a tough disease to get to the bottom of. X
From what you write here, it's hard to see how one could diagnose any kind of auto-immune disease? As you say, your blood results are entirely normal; even your repeat ANA value is only borderline positive (20% of healthy people have a borderline positive ANA).
Otherwise, the symptoms you mention are that last December you had a period of joint pain and feeling generally unwell, and now you have a 'dryish mouth at night' and 'get sunburnt after a few hours in the sun'.
I imagine your GP would have evaluated all this as pretty normal, so there must be something that doesn't sit right for you? Our gut instincts are often right about these things, so what is it that gives you the sense that there is something more long term or systemic about how you feel? Perhaps one way of getting a handle on it would be to keep a diary of symptoms - that may help you see some patterns, and help in further clinical discussions? x
Thank you for your reply. It is fatigue, family history of various rheumatic pains, and for the past two days I have pain in kidney area. In fact, last time I had such pain was under glucose tolerance test and I wee some blood and had to run to emergency to check this. I was told it was a small stone that passed most likely. My lower back has a dull ache just like last time but I was encouraged by the rheumy that I do not have anything. But at that time, my ANA was negative. I admit being hypochondriac but yes, I feel like something is off and my constant fatigue has a root cause...
Thanks. So, you've also done a glucose tolerance test,, had normal thyroid results and even looked for clues in an obscure genetic marker that may have some association with SLE? I guess that unless you are able to demonstrate something unusual about some part of your symptom picture, clinicians are going to have a hard time diagnosing anything. After all, I imagine 90% of their patients get burnt after a day in the sun, have some low back pain and feel tired?
I wonder if you could provide some evidence through quantifying your fatigue? It might be useful to use a scale that is widely recognised in the diagnosis of a condition like ME - see Part 7 of this link - meassociation.org.uk/about/... Sorry I can't be more helpful. x
You are right about the 5% of people in your age group have a 1:80 positive ANA without having any other indications of disease. However, it is higher in some groups, and you may get a rogue result in cases of acute infection or if you are taking certain meds. See webmd.com/a-to-z-guides/wha...
Mhm, I do not fall into any categories they list, I only take antidepressants and am on keto diet. Those are the only things I have changed and started having issues once in a while with some joint pain, flushing and cold sweats, feeling fatigued and my libido is much lower despite clear surplus of calories where my weight increased by 10kg in 5 months.
Welcome to the LUPUS UK HealthUnlocked Community, we offer a free information pack which you can download or request at lupusuk.org.uk/request-info...
We are not medically trained here, therefore, we cannot comment on your blood test results.
According to The Lupus Encyclopedia, Sjögren’s syndrome “affects the lacrimal glands, which secretes tears, causing dry eyes, and the salivary glands, which secrete saliva, causing a dry mouth”. To find out more about Sjögren’s syndrome and how to treat dry eyes/mouth, read our factsheet on ‘LUPUS: The Mouth, Nose and Eyes’ here lupusuk.org.uk/wp-content/u...
For more information, you can also visit the BSSA (British Sjögren’s Syndrome Association) website at bssa.uk.net/
Did you experience the ‘burning’ sensation of your hands in the cold weather? In people who have Raynaud’s, the small blood vessels in the extremities are over-sensitive to changes in temperature. This causes a Raynaud’s attack where the fingers sometimes change colour (but not always) from white to blue, to red. Sometimes the fingers may become painful or have a tingling sensation during the event. Symptoms of a Raynaud’s attack can last from a few minutes to several hours. We published a blog article on ‘Coping with Raynaud’s Phenomenon’ which you can read here: lupusuk.org.uk/coping-with-...
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ANA positive years ago
POSITIVE ANA but negative antibodies.
Positive/Negative ANA
always ANA positive with lupus?
Positive Ana and pregnancy 
