I was misdiagnosed for over 4 years before I was told I had lupus. My reaction? “Thank God, what’s lupus?” That may seem weird but I was continually being told by GP’s there was nothing wrong with me and that it was all in my head. To finally have a doctor believe me and actually give me a definitive diagnosis was a relief, at least I then knew what I was up against. The shocking thing is that this isn’t uncommon, the current time from start of symptoms to diagnosis is estimated as 6 years.

In this scenario those of us that have a lupus diagnosis are the ‘lucky’ ones, I am constantly contacted by people who think they may have lupus but their doctors don’t believe them and I know how extremely frustrating that is.

It does seem strange in this day of information overload that it still takes an extraordinarily long time to get a diagnosis of certain conditions such as lupus. It is a very tricky disease to diagnose but certain symptoms do point towards the fact that someone may have lupus and that it should be investigated further. Lupus also mimics other illnesses with an overlap of symptoms, so it needs very thorough investigation to also rule out the other illnesses. For further information on why lupus gets misdiagnosed so much please see our previous blog.

I’ve said on numerous occasions it’s not always possible that a GP has the skills to diagnose lupus as even for a specialist it’s difficult and takes more time than a GP is likely to have available to them. They often just rely upon blood tests which may not tell the whole story. Anyone thinking they may have lupus should be referred to a rheumatologist who are the specialists in auto immune diseases. GP’s may not want to do that as there’s a cost involved but had I been referred much sooner a lot of time and money would have been saved on the constant GP appointments I was having, so it would have been worth it in the end.

Early diagnosis is the key to treating lupus, I was very lucky that it hadn’t done damage to my organs over the 4 years I wasn’t diagnosed. Even if it turns out not to be lupus you need to know what is making you ill, you shouldn’t be dismissed and shouldn’t be in pain with no answers as to what’s causing the problems. So my first piece of advice to anyone is to be persistent. Don’t be fobbed off by a GP not wanting to investigate further or by them dismissing lupus after just a blood test, in hindsight that’s exactly what I should have done. If I’d have even heard of lupus I would have asked for a referral to a rheumatologist and been an absolute pest as when I finally did see a rheumatologist within one appointment I had a diagnosis.

I’d say definitely do some of your own research, but be extremely careful where you get the information, ‘Dr Google’ can potentially be dangerous. As you know there’s a lot of absolute nonsense on the internet, be sure to use websites such as ours which are overseen by lupus specialists and the information is accurate.

Keep a list of every single symptom so that when you do get to see a rheumatologist they have all the information, that includes anything new that you think might not be lupus related as some symptoms aren’t as common as others or may indicate that you have another autoimmune disease. Does anything trigger the symptoms or make them worse or better? Do they come and go, if so how frequently? If you have any rashes etc take photographs. Do you have a family member with lupus or another autoimmune condition? If you do make a note of that too, auto immune conditions tend to run in families so this again may point to the fact you have lupus. As I mentioned, lupus is a tricky disease to diagnose, our specialists don’t rely upon blood tests alone and will look at your medical history as well, that’s where the information will be very useful to them.

If you still haven’t been diagnosed and want some advice please feel free to contact us.

Angie Davidson

The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.