Hi All,
I have recently been bombarded with all the tests I could imagine for my persistent tiredness, joint and muscle pains and temperatures. I have a positive A&A result which has lead to my GP sending me to Rheumatology. My X Rays have come back as showing no damage to the bones although my GP mentioned SLE, would this not show up in x rays? I am very concerned - has anyone else had a similar experience?
Thanks all
No, that's not how it works. SLE is not a tumour that can appear on the xray. It is a disease of the immune system, so if you think of the overarching role of that system in our bodies you'll realise that it is unlikely to manifest itself in one place only and even more unlikely that it can be detected as easily as with an X-ray.
You don't mention your age (I.e whether around menopause, for example, which can accelerate reduction in bone density) or whether you have taken steroids. Steroids have a tendency of reducing the bone density, which is why doctors are careful when prescribing them. Maybe your doctor was just wanting to ensure you don't have an existing issue with bone density (osteoporosis or osteopenia, say) before prescribing them. Or if you've been on them, to see whether there is any damage.
SLE is a connective tissue disorder - bone damage is more likely caused by other things, or indirectly by the medication used to treat SLE (e.g. Steroids).
Hi
Thank you for your response, I should have given all the information sorry for that! Here is the full story. I am 29 years old and for the past year I have been experiencing symptoms that at first I ignored, but that have now got too bad to ignore. I am a swimmer so I am used to having sore muscles and achy joints after long swims. I started to notice that that feeling never left and that my hands and feet were swollen, stiff and aching. Along with this and extreme exhaustion I have also had - a rash on my face that comes and goes, swollen neck glands and very odd mood swings for me. Now the pain in my joints comes into different areas of my body every day - one minute my elbows hurt and the next my toes - but always my hands.
My GP thought it could be arthritis and did a host of blood work for this. I have had a positive A&A result and the doctor felt that I need to see a specialist because of this. The X Rays are to be given along with my history and blood resullts - although my GP said he links it's SLE which I hadn't heard of beofre. Now that the X Rays have come back with no damage shown I am worried they are going to think this is all in my head - which it certainly isn't. I have gone from an active 29 years old to someone who some days can't lift a cup because of the pain in my hands.
Anyway that is the full story.
Thanks
A positive ANA, coupled with certain symptoms you're experiencing could be sufficient to diagnose SLE, the X-rays are a red herring for the diagnosis of lupus but they are useful to diagnose rheumatoid arthritis, so if they came out clear of RA, then lupus is considered in the alternative. If lupus is active, more than one blood test might also be out of normal range which goes towards supporting the diagnosis.
No one wants to have SLE but when we know we are not feeling right we really want a diagnosis so we could start treatment, I know.
Hi Cass
Some excellent replies to you already, but I just wanted to add, that it is common for diagnosis of Lupus to take an average 7 years, or in my case it took 10 years. You see Lupus is a master of mimicking other conditions, yet blood tests and other tests come back either as unremarkable or within normal ranges.
Lupus is not diagnosed purely on blood tests et al and their results, physical presentations and history must and should be taken into account, a good Rheumatologist will know this, and diagnose accordingly.
We have all felt like we are losing our minds, and feel doctors think we are making it all up, or in our heads, my message to you is, we are the best advocates of our bodies, and hold on to that thought.
A good GP and referral to a Rheumatologist preferably who specialise in SLE and other auto immune manifestations is key to your journey.
Best of luck.
They will have been checking to see if you have joint inflammation which has caused erosion to joints. Csn happen in lupus but also RA etc. A standard part of the rheumatology diagnostic procedure. All takes ages. Hang on in there. For lupus you woukd also require a positive double Strand DNA blood test which the Rheumatologist will do. Good luck x
Hi,
Thanks for this as I am definitely at the stage of utter frustration. I have more GP appointments and my Rheumatology appointment through now. I just hope they take me seriously because I feel like I am loosing the plot!!! There are far to many obvious things wrong (obvious to me) that there is no question that something is wrong, but when the tests come back ad say that you are fine it makes me feel disheartened - this is not an easy journey.
Thank you for your kind words and I hope that you are feeling ok at the moment!
Hi,
I totally understand you cass1984! I had been told I was absolutely fine for years until my blood test (which I paid for) came really bad. Boom! clinics, tests, scans, everything but nothing and no one will give me back those years wasted on pain, suffering, frustration, fear that I was loosing my mind making up all symptoms...I am 28 y old now and still during the process of diagnosis. I am not happy that I might have lupus&Sjogrens but with knowledge of what's wrong, one may treat it and control it (already gave up smoking
Now I know, I can have an afternoon nap if I need it, with no regrets for not doing 100 other very important things. At the end of the day our health is all we've got!
It's really sad, that so many docs and health workers still think like in middle ages: if you're not dying, you're fine!
Be strong and honest with yourself. All the best!
Hi StardustA
Thank you so much for your response and I am sorry that it is such a tough journey for all of us! I am now at the stage where I am at the doctors or hospital very week with something. Either tests, new symptoms or just to chat through the next stage. I am tired both physically and emotionally!
Well done for quitting smoking - I have also done the same!!
keep in touch
Cass
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