Rhumatology in my area has no clue, GI is stumped to

Hello , I’m a 29 year old women .

I’d like to start off with the very beginning. When I was 15 I began having this crusting in my scalp and would be able to pick large flakes off , it itched and there would also be small sores and oozing. This would soon turn into a red crackling itchy sore rash all over my body , soon there would be night sweats, large lymph nodes , joint pain. I went on to see doctors at a children’s hospital where they first thought I was lupus and ruled that out , then cancer ruled that out, it ended with psoriatic arthritis , that was the diagnosis I received. My labs were clear other then CRP and ESR was extremely high. I would receive steroids. This went on for about a year after the rounds of steroids I was better.

I’d go the next 10 years pretty much okay, I’d have random sharp quick pain in my lower back , jaw pain , daily migraines, aching ankles while lying down that stoped with standing , sharp shooting quick pains in my wrist . Yeah I considered this okay I just lived through it.

In 2023 I stared having urgent yellow bowel movements I went to my pcp she blew me off . This is still continuing.

In 2024 I got the flu , two weeks later I was in the hospital with a terrible migraine, neck pain , red flushing of the face and chest, eye swelling , fever. After undergoing test for meningitis and that being ruled out I only learned I have facet arthritis in my low back. I was sent home.

A week later my hands would start falling asleep every night this would wake me out of my sleep . That soon subsided but it turned into a deep relentless aching in my wrist and hands.

I would then go see my pcp , she ran some inflammatory labs , I notified her of my PsA diagnosis which to her eval there’s no way because I wasn’t swollen and didn’t have any visible psoriasis. Thought my labs did show inflammation my crp was elevated as well as my IGA. She would then refer me to rheumatology.

I saw rheumatology for about a year I was tested again for lupus , I also had what looked to be a malar rash , they were very concerned that was what was going on but the lupus test were negative . After that he decided to go with the PsA diagnosis, which I was put on methotrexate with no relief, then humira which in fact took away my urgent diarrhea but didn’t touch my joint pain , about two months in I became allergic to the Humira and had to stop. I soon went to an another rhum to get a second opinion and she had me do all the test over plus some and the only elevated lab was CH50. After having a lip biopsy with no result I gave up for a while , I’d like to mention I did see a GI and dermatologist and they were no help .

My joint pain had spread it’s all over but I continue to NOT swell . This joint pain is migrating , not symmetric. It’s in my ankles, feet , lower back , shoulders , sc joint , hips , knees , ribs .

I went on a vacation back in March and before hand I had gotten a new pcp to get some help with the urgent diarrhea, with in two minutes of being on the phone with her she told me it sounded like IBD and put me on sulfasalizine said if the meds worked go back to GI.

Within 4 days of taking the meds my diarrhea went away. So I made an appointment with GI. While waiting for this appointment I had gotten very sick I was on lots of antibiotics and steroids so I help off on the sulfa for a week by day 7 I was back on the toilet 15 times a day so on day 8 I started taking it again on day 9 it was gone.

I recently saw the GI and his answer was he needed a week to figure out what to do with me that I’m to complex . Could be underlying IBD or could be from the PsA , but to do colonoscopy I would need to stop meds but I was on such a low dose he was not sure if I need to stop , but that he could take me off the meds go in and see nothing . Here were are a week later and no phone call , no nothing .

I don’t present like others but I am suffering and there seems to be no help in site , sulfa has taken away my diarrhea but my joint pain can be intense especially before rain or my periods . Sometimes for no reason .

At the end of the day I’m looking for advice on how to proceed with finding help and if anyone has experienced such as myself .

CRP HIGH
IGA HIGH
CH50 HIGH

Extensive family history of Autoimmune disease