please can someone advise - don’t know which way to turn

[Nene2023]

diagnosed conditions:

Sero negative rheumatoid arthritis since 13 years old - carpal tunnel syndrome - reynauds’s - malignant melanoma x 2 (2015 & 2023), ischemic stroke (2023)

GP blood results in October 24 indicative of SLE and Sjögren’s - rheumatologist refused to see me - upon pressure from GP finally had consultation 28th February 25

Days before this appointment ended up at a&e and anterior uveitis in right eye diagnosed and treatment started, then urine showing very high leukocytes - after consultation both elbows flared up and told psoriasis then back to a&e with urticaria to feet ankles and legs (wanted to rip my skin off)

Have constantly suffered with major fatigue, dry mouth, mouth ulcers, nose ulcers, constant headaches, spasms and tremors, flaring joints, light sensitivity, swelling toes, constant swollen neck glands, twitching eye, numbness and tingling to face, mouth and ear, for a number of years - all these are considered seperate isolated incidents

ANA positive (apparently was in 2020 but wasn’t informed)

Serum C reactive protein high (12.2)

SS-B high (1.9) SS-A normal

All other tests normal or borderline

Rheumatologist insisting I don’t have SLE or Sjögren’s and everything else just coincidence

Discussed starting me on sulphasalazine or methotrexate but now no record of this - (rheumatologist hasn’t physically examined me since prior to 2020- all consultations just discussions either face to face or on telephone) no one listening or treating me

I asked GP for second opinion referral (which he did) but I was refused and the referral was declined

What do I do now? In pain and feel so low that no one believes me or symptoms - can anyone help and offer a suggestion please?

[field]

Hi Nene2023,I am so sorry you are going through this, I feel your desperation and frustration.

It seems to me you have done everything you can to get help and you are just hitting a brick wall.

Have you tried putting a complaint in to PALS detailing everything you have outlined.and see if they can help.

Don't give up, I know how hard dealing with the medical establishment can be and I know its tiring, but please keep pushing until you get taken seriously and get the help that you need.

X

[kt11]

I'm so sorry you are going through this, it is bad enough without the pushback from the people who are supposed to help you. You should definitely contact PALS. Wishing you all the best and I hope you get the help you need xxx