Please help seronegative inflammatory arthritis

@sas2012 I agree, you should check out a comprehensive medical center in your area or a university hospital. Just call them and see if you can get an appointment. You may have to travel a distance , but I tell you, it’s worth it. When the local doctor said they didn’t know what was wrong and even were puzzled by the MRI, my husband called the state university and hospital. He explained everything and the university made an appointment with neurology for us. In 4 days I was being seen by the neurologist , who knew exactly what I had. They have continued my care for about 8 years.
Think you could look up a comprehensive medical center tomorrow?

@becsbuddy what was it you had ? Thank you 🙏 for replying. I’m in UK so unsure who I could call ? I think half the battle is won when you know what it is

@sas2012
I have an autoimmune disease that attacked my brain. Some neurologists say that it looks very much like multiple sclerosis, but it’s not. I was losing every thing until my husband took me to the ER for the Nth time and the doctors could tell that I was barely responsive. But here I am today!
So, are you concerned about your arm/elbow? What has your GP said about it? I know that your system is totally different than ours so I’m not sure what direction you should go. Your GP should be able to refer you to a specialist.
Think you could call on Monday and get a name?

Hi, so sorry that you're going through this! Fellow Brit here struggling with constant pain on all my joints for 5+ years that have been dismissed by NHS several times. I fed up and went to a Rheumatology Clinic in Turkey last October, got diagnosed there, came back and showed all the results including the MRIs, Xrays, diagnosis and the prescription. Just in December saw a specialist reffered by my GP, he diagnosed me with seronegative arthritis, prescibed sulfasalazine, which I see minor improvement and some days it still flares up to be unbearable.
Hope you'll find the help you need in no time, keep on fighting!

To BecsBuddy,
Another Brit but living in Los Angeles. It took 4 rheumatologists, but I was finally diagnosed and treated for rheumatoid arthritis, seronegative Sjogren's Disease, and SLE.
I know it's frustrating, but please keep trying to find a rheumatologist who knows about and understands these rheumatological diseases. Unseen damage can be going on inside your body before you get treatment.
I'm now getting IV Ig every 3 weeks for neurological problems.
I still have pain, flares, and other problems, but I feel my concerns are being addressed. There are several medications specifically for Sjogren's currently being tested that will hopefully be on the market at the end of this year.
I agree, keep fighting.

@becsbuddy I’m so sorry to hear what you have gone through ! How are you now?
With myself what is verty concerning is new evidence is not opening care pathways with this trust they know if they diagnose me they have to admit they should of treated me earlier so I’m in a closed loop until someone with authority owns the diagnosis in another trust. I gave evidence of widespread bone re modelling everywhere and joint effusions on ultrasound but they are looking at everything in isolation deliberately as it’s the system being risk averse. I now have to pay again and then swop trusts to get help. Elbows reported as normal. Olecrenon not examined which is where golf ball swelling is

@marina88 This is very re assuring that eventually you got treated. How long did it take ? I’m on my 4th rheum with the next appointment next week, I’m praying they help me as I’ve no quality of life swelling constant no mobility and can’t chew now as my TMJ is affect

@suysuy Oh my goodness what a story! 5 years! Where is your swelling and pain ? Cannot believe you had to go to a different country to get help! I have literally been contemplating the same. The gaslighting, the dismissals despite visible joint swelling and deterioration, it’s horrific! I even tried to get my joints recorded twice by nhs rheum and took a witness and he said he couldn’t see it! I am psychologically disturbed by all of it! How are you now ? Thank you for replying

@becsbuddy My elbow is enthesitis and Olecrenon bursitis I was told by private

@sas2012 Thank you for your reply, really appreciated! I've been told it's due to postpartum, then told I'm just doing too much (working full time with a little one and the household chores) and hurting my hands and feet, then told it must be pychological!! At that point I felt like a 1950's housewife getting blamed of hysteria!
I had slight swelling on my hands, fingers mostly and both my feet but everytime I tried to prove it to a healthcare professional it looked ok for them so I was dismissed.
Then I got pregnant again and all my symptoms dissapeared! Around that time AI was a new hype so I asked what would be the diagnosis with all my history and that mighty machine stated that it looks like a chronic autoimmune disease as they tend to cease while pregnant. When the second baby was around 4 months we went to Turkey and asked this to the rheumatology specialist there, he said it's the perfect test!
Now waiting for April to be seen here in UK and complain that the sulfasalazine doesn't work and I need better care.
How are you coping? I hope they treat you well now.