hello from undiagnosed 20 year old!

vickystod

Hey guys,
Just wondering if other people have had problems with diagnosis?
I have had pain and swelling in both knees since the age of 16, (I'm now nearly 21) which had possibly been put down to lipoma arborescens, apparently a very rare condition which is thought to have links with arthritis. I have had synovectomys in both knees to remove the tumours causing the swelling but all swelling and pain has returned even worse than before. Pain is now throughout my body, mainly shoulders, hands, hips and knees but pretty much all results coming back negative with the most recent blow from my rheumatologist saying no evidence of inflammation in your shoulders from the ultra sound scan so it is unlikely you have arthritis. Don't get me wrong I'm glad there is no inflammation but doesn't explain why my body is in so much pain!!
Big history of autoimmune diseases in my family and really don't know what else it could be.
Anyone any experience of seronegative arthritis or general problems with diagnosis?
Feel like I'm hitting my head against a brick wall!!!
Thanks in advance

stickywicket

You say you've had treatment for lipoma arborescens (which I'd not heard of but which sounds unpleasant) and your rheumatologist has done scans which indicate no inflammation. Yet there is a family history of auto-immune diseases.

We can't diagnose stuff. I have very simple, obvious RA which has ushered in OA over the years but at least I know where I am with them. In your situation I think I'd be doing something I always tell people not to do ie I'd google 'auto-immune diseases' and see if any fit the symptoms. Alternatively, you could always ask to see a different rheumatologist but yours sounds to be doing his / her best. I wish you luck.

vickystod

Thanks for the reply. I am displaying pretty much every other symptom of arthritis but the rheumatologist seems to be hung up on focusing on either my shoulders or knees and not putting it into the bigger picture which I am finding frustrating.
Because lipoma arborescens is so rare the only treatment that has been shown to work is a synovectomy which I have had in both knees but hasn't worked. There seems to be little understanding how daily pain can affect quality of life etc.
I understand I have a bit of a complex case which is making things harder to diagnose and treat but no one is wanting to commit and properly look at my case which is looking like I will have to go private!
Just finding it all a bit frustrating being in so much pain with very little explanation or relief from it

dreamdaisy

Hello, having read your initial thread a couple of times I hear the echoes of my saga of diagnosis. I was born with eczema and then developed asthma aged seven (both auto-immune conditions). My arthritis trouble began many moons later when I was 37 but my then GP didn't recognise it as arthritis, in fact she didn't recognise it as anything. My left knee began to swell when I was that age (in 1997) and it kept on swelling. To cut a long story short by the time I reached orthopaedics (in early 2001) it was circa 25" in circumference and I had my first synovectomy in February 2002, when it was 27". At that time rheumatology wasn't that impressed by my troubles but I persevered in bothering them so they classed me as an inflammatory arthritic and began treatment. In 2006 my skin helpfully obliged with a bout of pustular psoriasis on my palms and soles, thus psoriatic arthritis was diagnosed. It changed nothing meds-wise.

I knew, when young, that auto-immune troubles were in my mother's family (eczema and asthma) and have since learned that they were also in my father's (psoriasis). When I was born the familial link lay undiscovered (plus they both avoided the rubbish genes they so kindly donated to me) so aren't I the lucky one? In this day-and-age those dealing with you should be more aware of these matters and looking at the bigger picture.

There are around 200 kinds of auto-immune arthritis but I am not sure of the figures of the sero-negative kinds. PsA is a sero-negative kind of inflammatory arthritis so keep asking questions and pester, ever so politely, because you have familial evidence and you need answers. I wish you well. DD

stickywicket

I'm sure, in your situation, I would be every bit as frustrated as you sound. It's quite common on here for GPs to appear to be unaware that, if bloods come back negative, then inflammatory arthritis can still be present. I don't think rheumatologists do that though.

Going down the private route would be an option but why not just ask to see a different NHS one if you have no confidence in your current one? Teaching hospitals are usually the ones that attract the best consultants.