How do I get a diagnosis when my rheumatologist r... - LUPUS UK

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How do I get a diagnosis when my rheumatologist refuses to investigate?

TJ2097 profile image
11 Replies

I was recently sent back to rheumatology after 6yrs as my immunologist has retired & despite an entire team of immunologists & my endocrinologist coming to the conclusion I likely have lupus, My rheumatologist is straight up ignoring the evidence & refusing to run tests so I can get diagnosed.

I don’t know how to proceed, is it possible I could ask to see someone else?

(This is my 2nd negative experience with him, the 1st was filled with very sexist comments.)

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TJ2097 profile image
TJ2097
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11 Replies
Insomniacette profile image
Insomniacette

Write a letter outlining the facts dispassionately (including sexist comments) to your GP explaining you've lost faith and asking to be referred to a different rheumatologist.xx

Jig-saw profile image
Jig-saw

Hi, I'm just wondering how often you see the rheumatologist and if they do things differently as each time I see mine she requests full bloods and urine sample.Rather annoyed for you as what can it hurt to run the blood tests to confirm or discount it and give you answers.

I agree with Insomniacette talk to GP hopefully they will at least listen, be more understanding and be able to offer a better solution.

TJ2097 profile image
TJ2097 in reply to Jig-saw

I’ve never actually seen a rheumatologist other than this guy who I’ve spoken to twice in 7yrs & he managed to make me wish I hadn’t both times.

Hopefully I’m able to see a qualified rheumatologist soon so we can actually moved forward with tests & diagnosis already!

KayHimm profile image
KayHimm

Whenever a doctor contradicts prior doctors that should be carefully explained to you and recorded.

I agree with others. Discuss with your GP the possibility of getting a new consultation.

Best of luck.

Muff20 profile image
Muff20

Hi TJ2097, so sorry your having this experience unfortunately it seems so common with these conditions. My rhuematology consultant said she won't keep testing me!! So how can I ever get the right treatment 🤔 As I have a few conditions and under about 4 different departments they all say ask the other consultant about a symptom it must be there problem.😤You can ask to see someone else and you can go to PALS and make a complaint if your not happy. Unfortunately at the moment with the strain covid has caused there still might not be an improvement. Good Luck and I hope you get more answers.🤞🏼

Lily77 profile image
Lily77

You seek a second opinion....and I am particularly horrified by what you call "sexist comments". I have a lady rheumatologist.

TJ2097 profile image
TJ2097 in reply to Lily77

Yep, it was very unpleasant having him tell me that as a woman I should be less emotional & smile more (I couldn’t of had a blanker expression lol)

Then his refusal to run bloods till a nurse stated they’re mandatory for inpatients so he got annoyed & threw em under a receptionists name to avoid taking responsibility.

Report him, he’ll be suspended snd you’ll get a new rheumy

TJ2097 profile image
TJ2097

Thanks for your help, it seems he has a history of mistreating patients & even was ordered to retrain but clearly has not improved, I’ve asked my GP for a referral to a rheumatologist I know has a better reputation.

MrsMarigold profile image
MrsMarigold

I’m sorry this happened to you. That is extremely demoralizing to be spoken to that way. Here in US, after your ANA hasBeen established as positive it is not tested

Again unless you change Rheumatologists.

Until Covid, I go every 3 months, blood is drawn for inflammatory markers and urine

Tested. The Dr. I see is male, very professional and comments like that would

Never be spoken. I hope you find a better

Rheumatologist to treat you!

LalSD profile image
LalSD

I think if he refuses you a diagnosis, I would think they are failing their duty of care... It is also possible to put you on a trial hydrocxyc. or plaqunil to see if your symptoms would improve. Thats what my doctors did. My initial one refused to accept i had lupus, and the next agreed to try and guess what they second doctor saved my life because she tried the med before diagnosis and it was not long blood test and my body showed i had SLE. At some point i thought stye were giving me a placebo (laughter) to shot me up. When my daughter was going through the same, we did not take chances, she was put on meds immediately and she has Lupus as well and we managed to intervene on time. Hope it helps.. With best, L

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