Can you be partially diagnosed with lupus? - LUPUS UK

LUPUS UK

27,301 members23,462 posts

Can you be partially diagnosed with lupus?

Hidden
Hidden

Hi, my name is Kelly I'm 30 years old I have recently been tested for lupus and was called back to the gp to discuss my results. The doctor said the counter markers we test for lupus one has come back positive and the other borderline. What does this mean?? Do I have lupus? My mum has lupus and I'm showing a lot of the symptoms, my mum things I have it. Has any one got any advice for me? I feel I'm thumberling in the dark here. Because of my symptoms the doctor has still refereed me on to rheumatology. But stated she didn't want me to tell my family I have lupus?!? Very confused I understand this is an invisible illness and answers don't usually come quickly. Please if any one can help or has had a similar experience please let me no. Thank you for everyone's time to read this and reply. Much love to everyone out there stay strong and you will win this fight!!!! 🦋🦋💜💜🦋🦋

9 Replies
oldestnewest

Hi Kelly Your doctor sounds as if she is covering her back by telling you not to tell your family..... Goodness knows why - if the test is positive it's positive ..if it's borderline it's borderline. There is nothing she can be blamed for ...... so I don't know where she's coming from.

Hopefully the rheumatologist will retest and you will get a definite answer.

I have never had a doctor tell me not to tell family about my health. If you feel you need to share it with your mother you definitely should - tell her what your doctor told you......your mother will understand as she has lupus and understands the condition. Let's hope your next set of tests from the rheumatologist are more accurate.

Hope you can see the rheumatologist soon as that should set your mind at rest AC

Hello Kelly

I suspect two things might be going on here. One is that GPs are not specialists, and many will be reluctant to give a new, definitive diagnosis of a condition that is as complex as lupus/SLE. There are many other related conditions that would look very similar to lupus so it is quite usual for a GP to suggest that lupus might be one possible diagnosis, but to wait for a specialist rheumatology opinion before confirming exactly what it is.

Related to that is that, as you suggest, the diagnosis of lupus and the related disorders sometimes needs observation over a prolonged period of time rather than a one-off observation. One reason is that the levels of some of the blood markers change over time. But some people with an AI condition test negative occasionally, and some people without any AI condition can test borderline positive occasionally.

So I imagine that in your case, your GP has observed enough symptoms to think that it requires a specialist opinion, and that you may well have a systemic auto-immune condition of some sort, but does not want feel confident enough to give a definitive label yet. It's frustrating, but it kind of comes with the territory x

It sounds to me as if you have a good doctor who picked up on early signs of autoimmune disease. He is sending you to a rheumatologist for confirmation of the diagnosis. There is no one lupus test, but initial tests are pointing in that direction. The immune system is very complicated. The rheumatologist will evaluate you thouroughly and likely do more tests before deciding on a treatment plan. It is hard enough to be diagnosed with a chronic illness but to have uncertainty makes it harder. These illnesses are very complex. Please have faith your doctors will be doing everything to help you. Do not hesitate to ask questions.

Hidden
Hidden

Thankyou so much for all your replies!! 😘💜🦋 I really appreciate these! Xx

Hidden
Hidden in reply to Hidden

I agree with the comments that say that Lupus has to be diagnosed by a rheumatologist not a GP. And your GP is actually helping you by advising you not to tell your family and friends you have Lupus yet in case it is something else.

Just because your mum has Lupus it doesn’t mean you do - it only makes the chances of having some form of autoimmune disease higher but there are many that show up borderline with the same tests eg Rheumatoid Factor and ANA.

And if we decide on a name and tell everyone it’s this - only to find it’s a different problem - then it can be hard to explain ourselves and be a bit humiliating if the rheumatologist then diagnoses something else or isn’t prepared to diagnose anything yet.

We all want a label in order to come to terms better - but sometimes people then really struggle with acceptance when they are told they don’t have this disease after all. And so your GP is actually helping you to keep an open mind for now until you’ve been properly assessed by the specialist.

First full sorry about the diagnosis if you’re not happy with the doctor, get a second opinion see what the rheumatologist says and take it from there, I would personally tell my family to make them aware of in advance hope all works out keep us posted will pray for u 🙏🏼

X

AgedCrone
AgedCrone in reply to Mystik

I agree with you Mystik, Just to be clear, I was not suggesting Kelly goes home all guns blazing saying she has lupus.

What I meant was she shouldn't stress herself by keeping the information to yourself, but she should just tell her mother and family what the doctor actually said & that she will be seeing a Consultant Rheumatologist to clarify the situation.

I've had many suggestions of diagnoses over 20 years& have voiced them all ......I find talking about "what ifs" therapeutic .....my imagination needs reigning in sometimes.

What is it they say ? A trouble shared is a trouble halved!

Mystik
Mystik in reply to AgedCrone

I know what u meant no hard feeling feelings hope u r well

AgedCrone
AgedCrone in reply to Mystik

No of of course no hard feelings...... I'm good thank you..I drifted over from the NRASsite when it was thought I had Drug Induced Lupus...but it turned out not be so, still on the journey of discovery.

You may also like...