Several years ago I was having a lot of joint pains in my legs and fevers. I was referred to haematology who then referred me on to infectious diseases. The consultant did blood tests and told me I had a positive ANA test and anti-Double stranded dna antibody test which was positive, he diagnosed me with lupus and referred me to rheumatologist who said he didn't think I had lupus as I didn't have a rash on my face.Roll on a couple of years, whilst still having joint pain, I was diagnosed with blepharitis and dry eyes. Then earlier this year was having palpitations and chest pain and it turned out I had autoimmune thyroiditis.
So I recently went back to my gp and she has once again referred me to rheumatology.
Do you think these things are unrelated or do you think it's lupus.
I do suffer from fatigue and dizziness very often and often get bloated.
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Poppy-12345
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You have certainly had a lot of concerning symptoms in the last few years. Doctors were clearly concerned about you and sent you to specialists who could better pin down your diagnosis.
Is there a way you can get the rheumatologist’s written evaluation? You said he thought he didn’t think you had lupus. He may have said that was still a possibility if more symptoms developed. The fact that you were sent to a haematologist and infectious disease specialist makes me think your case was quite complicated.
The fact that you didn’t have the malar rash doesn’t rule out lupus, but the rheumatologist may have just used that as short hand for not seeing skin or other involvement at that time.
Based on what you have said, I can certainly see why GP wants a second look by rheumatologist. Your new diagnosis of thyroïditis is not specific to lupus - I have that with UCTD - but was one thing to alert my rheumatologist to possible autoimmune disease early on.
I really hope you get clarity soon. I think your GP has been on top of things. Keep taking your temperature.
I had all the same test that you had and all the same symptoms and one doctor said I had rheumatoid arthritis. And I went to another doctor because all I was doing was taking a lot of pain medicine with no relief and that doctor took more test and found that I had lupus. So you might have to find another doctor.
If you have dry eyes do you have dry mouth, dry down below, fatigue just for starters you could look at full symptoms of Sjogrens Syndrome. It often goes hand in hand with other autoimmune conditions. Just a thought as many doctors/ophthalmologists don't even spot it and mistake it for just blepharitis. It has a large range of symptoms too internal and external. I have it along with lupus and joint and nerve issues which are as yet undiagnosed but I'm having investigations. A new trip to a specialist Rheumatologist in autoimmune conditions is a good idea. Research your rheumy to see if they are the best one to see. It's key to a diagnosis and the best ongoing care. I hope you get answers soon.
Not everybody with lupus gats the malar rash; I've had it for over 30 years and have had it maybe twice? I tend to get rashes elsewhere. Sjogren's (dry eyes, mouth, nose, ears, vagina can be any combination of these) sounds like a possibility. It can also affect other things if it's a primary or secondary condition. Lupus is a bugger to diagnose correctly as so many autoimmune diseases have very similar symptoms. For example, I also have Ehlers-Danlos and sometimes it's impossible to tell whether it's that or the lupus causing the joint/muscle/tendon pain. Personally I believe the anti-DNA is a more accurate test for lupus than ANA (many healthy people have a positive ANA from time to time and many people with lupus have a negative ANA, again, mine is usually negative, even in the middle of a massive flare). I would personally say write down all your symptom, find the lupus criteria check list and tick off what you have and take that with you. I think it's crazy how a Consultant diagnosed you with lupus but a rheumy said you don't have it. I did have something similar, my diagnosing rheumy retired and a rheumy I had later down the line said I didn't have lupus because I had no organ involvement (I actually had my colon and ileum removed because of this condition & APS)...I absolutely lost my sh*t with him (my diagnosing rheumy was a lupus specialist) and said "So you are basically saying DR.P was wrong and everything for the last 17 years has been a lie?". He replied "Well, no", so I wrote to my diagnosing rheumy (who had then retired) who very kindly wrote back telling me to ignore what Dr. K had told me and there yes, I most certainly had lupus and if anyone said otherwise they were obviously incorrect. carried on under Dr. K but always in my notes it mentioned "lupus" so I think maybe he possible went back over my notes or spoke to Dr. P, or one of my other Consultants, I don't know. A year later I managed to change to another rheumy who was also a lupus specialist and I told him what Dr. K said. He laughed for a good 5 minutes and replied "You have lupus, you have always had lupus, you WILL always have lupus, I think by reading your notes and all your medical history anyone that said it wasn't the correct diagnosis obviously shouldn't be in this field".
Not quite sure what my point is after this very long winded reply but people can make mistakes so always push for answers and confirmation, and make sure it gets added to your medical notes.
Hi Poppy, sorry you have had so much trouble with the diagnosis! It’s often very difficult for us to get a clear diagnosis for our complicated symptoms. Your symptoms sound very AI to me, if not lupusy, but many lupus symptoms do overlap with other AI diseases, so unfortunately it can take a long time to work out whether it’s lupus or something similar. Doctors usually have to run through many different tests and sometimes repeat them several times before they can be sure. My diagnosis took 8 years; initially I only had a few symptoms, then developed more symptoms years later which made diagnosis more straightforward. But I have never had the malar rash, and have been diagnosed with lupus, so it’s definitely possible! Keep going with the investigations if you can, it’s worth getting the clarification.
I'm sorry to hear that you have experienced so much uncertainty about your diagnosis.
As several other members of this community have said, a (malar) rash on your face isn't a requirement for a diagnosis of lupus. However, it is often considered a "classical" symptom of the disease and, as one of the few visible signs, it can sometimes be over-relied upon for diagnosis.
When the rheumatologist thought you didn't have lupus because there was no rash, did they give any indication of what else they thought could be causing your symptoms?
We're not medically trained, so we cannot say whether your combination of symptoms could all be linked or have separate causes. However, with the combination of symptoms and your previous diagnostic history, it definitely warrants further investigation.
Do you know which hospital you've been referred to? If you are concerned about seeing a doctor who is not very experienced with lupus, we could provide information about which lupus specialist consultants are near to where you live.
If you want more information and guidance about getting a diagnosis of lupus, please take a look at our article here - lupusuk.org.uk/getting-diag...
Please keep us updated with how you are getting on and if you need anything else.
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