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Profile picture for cptrayes @cptrayes

Good luck! I thank my lucky stars every time I read stories like yours that I'm so conclusively serum positive! It's a real battle if you aren't, they just don't want to admit that you need expensive drugs.

I hope you get the help you need.

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Replies to "Good luck! I thank my lucky stars every time I read stories like yours that I'm..."

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.