I'm in the process of diagnosis which i know could take some time.
Some of my symptoms lead to RA others to Lupus. So can you have both or does one exclude the other??
Unrelated, but I'm new here - please can someone direct me to a forum users guide? I am struggling to find my way around and can't find my previous posts, for example and how do you post in specific topics?
Many thanks
I was tested for RA and any other arthritis. All xrays were negative. I have lupus and raynalds. Severe joint pain. Especially in my hands and thumbs. I cant open simple things anymore.
That sounds tough Author_ink. Sending you my very best wishes
I have Lupus and RA ....I was diagnosed with both at the same time...
The symptoms of many autoimmune disorders are similar - and RA and lupus are just 2 of hundreds. The only people who can identify what is what, do the tests and make a diagnosis are the doctors. You get a referral to a rheumatologist - and they do the tests to rule things in or out. But it isn't simple.
If you scroll to the bottom of this page you will see the top of the list of recent posts. If you scroll to the top of the page you will see LupusUK Home Posts etc - click on each to see LupusUK stuff. At the top of the page is a bar with your user name My Communities a notification bell and Help. Click on each of them for that info.
Thank you PMRpro. So could you have more than one condition or do the many different combinations of symptoms lead to a specific one of the many different conditions? Just trying to get my head around it.
I'veve got a follow up appointment soon and just wondering what to expect (I've had multiple tests and received various results but the dots have not been joined as yet to form a diagnosis - although I appreciate it isn't that easy).
Thanks also for the help with the navigation!
It's difficult to explain really. You may have two different things at the same time - with specific signs of each and needing a more complex mix of medications to deal with the different symptoms. Or you may have a broad mix of symptoms, some from one illness, some from another, but not enough of each to say it is x or y specifically or because a symptom that is regarded as crucial is missing. Depending on which direction the symptoms point at they might say it is undifferentiated connective tissue disease - which means there isn't one particular illness that dominates but it is still a diagnosis even if it doesn't sound like it. One particular set is labelled mixed connective tissue disease.
I suppose it's a bit like mongrel dogs - some look like one or other parent, others look like nothing in particular! And yes - it is hard to get your head around the breadth of what they have to consider. But it doesn't make that much difference what the label is in most cases - they can only really treat the symptoms. As long as they manage to do that you then work from there.
That is such a helpful post, thank you PMRpro. I guess I am looking for a label to help myself understand better but I'm learning that it might not be that simple. Thanks again. I'm struggling emotionally to get my head around things. This is all far more complex than I expected it would be when I was sent to see a rheumatologist about my 'dodgy joints'...
All chronic illness involves a struggle to get your head around it - but one piece of wisdom: don't waste your energy fighting against whatever it is you have. Accept it is there and then work on ways to get around it. Acceptance isn't giving in, it is making your peace with something that IS - and devoting your energy to working out the diversion. You get to the same place in the end - different scenery and maybe a river or two to cross but doable.
I will try and add to PMRpro by explaining my diagnosis. I was diagnosed with RA in 2001. But it what they call sero neg. I had all the physical signs but the blood test for it was negative. Other bloods showed raised low white count, anaemia, raised ESR (a sign of auto activity) etc so something was going on. Because my joints and fever was the first things I mentioned that was my diagnosis. As symptoms have emerged over time I now have multiple diagnosis .SLE, Sjorgrens, Hyperthyroidism, heart problems, migraine/ temporal lobe epilepsy, RA, etc etc It goes on. This is why its so difficult to diagnose and as already been said a mixed connective tissue disorder my been diagnosed. RA in SLE is different because it is not degenerative, it separates the joints then they go back. If it is in its own right it is distructive. Hope this helps.
Thank you johare, that's all so helpful. I think I just need to stop worrying (and googling....) and develop some patience. I've got an appointment next week and whilst i don't expect to get a diagnosis, hopefully I'll get some answers and direction and advice as to the next step.
Feel like I'm in limbo land at the moment though
Hi Avacados,
According to The Lupus Encyclopaedia, “It can sometimes be difficult to tell if someone has SLE or RA early in the course of the illness”. It further states that “RA and SLE can occasionally occur in the same person”. We published a guide specifically explaining the diagnosis of lupus which I hope will of help to you: lupusuk.org.uk/wp-content/u...
Please keep us updated, all the best!
Thank you Chanpteet, this is all very helpful. I'm going to try to keep away from the internet now and just wait to see what new information I'm given next week (eg the MRI and latest blood results) and then take it from there.
Thanks again everyone
Me too, I'm still trying to work it all out 😁
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