Please help seronegative inflammatory arthritis

What did you or are you going to do?

I am so similar, I do have Rheumatoid Arthritis RHA Factor, but low, Osteoarthritis and more, my fingers are gnarled and twisted but I’ve never spoke with anyone else who’s been diagnosed with costochondritis, I had one overnight in the hospital not sure if I was having a heart attack or what. The pain was so bad I was massaging my chest for days. $28k ++ later no one can help me. I still get the stabbing pain, frequent aches, if I ever had a heart attack I’d likely think it was another extreme day. I’ve turned into one of those people that always had an ache or pain to complain about and I do not like that at all! It’s not who I want to be.

Are Brits still entitled to a second opinion with healthcare?
Can you get yourself to one of the hospitals that specializes in your conditions to get it recognized? I am a Brit in USA and I am thinking of returning to Britain, but you’ve got me worried now.
Good luck.

The NHS is on its knees but it's very variable from one region and one specialism to another. My husband in on the waiting list for an ablation to sort out atrial flutter. He's been told 8 to 9 months. We have just paid 20k for a pacemaker because he could have died waiting for that. Private services are now also under pressure because of the number of people spending their life savings to get off waiting lists. My NHS rheumatology department doesn't even answer emails asking what to do about serious side effects, so I pay a private guy as well I wish I could be more positive about my own country, but that's the honest truth, sorry.

I have an appointment with a specialist who will count the areas affected by enthesitis.. I have counted myself and its 16!!!! 2 or more areas the NICE Guidelines state must be referred and treated. Its absolutely shocking. They have now tried to remove the costochondritis diagnosis from 2018 that links the sternum sclerosis..... I didnt want to take legal advice, as its not about money, but this has gone too far now....
Theyre closing ranks as my rhuematologist found multiple sites ofsclerosis and the NHS trust wont admit this fully. I swear if i get a chance at life again and togetsome quaity of life i am dedicating my life to helping others that may face similar situations

Have you ever considered you pay have the same disease? Have you had frequent costo attacks? I understand so much how youfeel this disease takes everything from you i havent been out of the house in 2 years apart from to apts. Its also made me loose relationships as i have no sex drive it hurts to be touhed and even hugged x

The NHS is broken i would advise against it personally. If you have a recognised conditio nHS found im sure youd be ok, but if like me, you have an atypical presentation and they dont have to treat you, they wont. Worse still if they know theyare liablefor missed findings likeme, they close ranks and protect each other. Thing is i dont know what they are playing at as i will just pay for another and see a specialist privately, theyre not getting aay with this. Ill be lucky if i get any quality of life back now its reached my TMJ and skull- 16 enthesitis points

Oh my goodness this is so difficult to read! 20K???? I have no words! You work all your life and then get forced to spend the savigs you earned just trying to survive! What an absolute sham of a country we live in!

Do you mean serum calprotectin? As thats the only blood test i havent had. My CRP and ESR normal. Raised MCV freelightchains and lambada- all because of uncontrolled axial and peripheral sponsyloarthritis, but ratherthan accept this and the diagnosis they will send me for tests to look for a marrow issue.....i had a marrow signal in 2020. Theyre just delaying treatment and deferring care. I will disclose something shocking that i still havent recovered from and what setthis chain of events off. My first rhuemy i paid private for, trailed me on various meds to rule out other conditions, told me he was 100% in person but on paper said 'it certainly looks like Axspa.. This rhuemy i saw several times over a 12 month period, he watched things progress, told me my elbows were enthesitis and the lumps on the back of my skull in 2024, and then.......because my MRIs didnt match up (no contrast given) He cancelled my appointment thati made as iwas getting worse and sent me to a pain clinic for the mechanical issues i had like annular tears caused by the disease!!!! This caused a chain of gaslighting neglect and dismissal. I was subsequently refused a referralback to NHS rhuematology, ithen got x2 opinion who gave me a working diagnosis of seronegative inflammatory arthritis, she attempted to intitiate Sulfasalizine through the NHS and they declined until id been seen by the NHS. 12 months later its spread bilaterally all over my body, i screamed for help, sent photos in when i couldnt walk, but nothing was done, i even made an aptto see an MSK specialist to get my joints checked and instead it was a pre determined appointmentthat sent me to pain management, who were horrified when i arrived in a wheelchair with an inflmmatory arthritis diagnosis and told me i should never of been sent here. All thos consultant had to do was write a supportive letter to NHS but instead he saw me as too much trouble clearly and left me to rot.

Youre entitled to as many opinions as you want i later found out.