Who can I asked to be referred to (from rheumatologist) who would know about Lupus? I need a specialist! North Wales...

[RobinGoch]

I am seeing rheumatologist next week to discuss numerous bloods that apparently showed nothing (!), obviously he wants to discharge me but I want to discuss questions I have about possible lupus symptoms I can see in myself, with someone who actually knows about the disease or autoimmune problems in general, before accepting that I am just a sickly person with a dodgy immune system. Who could I ask him to refer me to? I live in North Wales...the rheumatologist is based at Glan Clwyd hospital. I could travel further afield ... thanks!

[Hidden]

Hi Robin, I am very sorry you are going through all of this. It’s very frustrating.

With the ANA tests, there are false positives and false negatives, so idk how many times they’ve run this test but you may need to push for more tests to be run.

If you suspect Lupus, the rheumatologist is the correct person to see. Give her/him a bit of a chance before changing doctors, but quite a few of us have had to switch our rheumatologist, so that is a possibility.

Also, Lupus is called ‘The Great Imitator’ because it can resemble so many other things. Most of us have, or are going through testing for years before getting a diagnosis. Some are lucky enough to get a diagnosis quickly, but that’s generally not the case. So patience is definitely a needed virtue with this or one could lose their mind. 🤯

There are several connective tissue diseases and they are autoimmune diseases, and I believe they all fall under the umbrella of rheumatology. Then there are others that fall under endocrinology. There may be even more specialists that other AI’s fall under, idk🤷🏻‍♀️. So be patient this may take a bit to figure out. I know it’s very frustrating waiting for a diagnosis. It’s like putting your world on hold. You don’t know what to tell people so that they’ll understand, and you’d like to know so you can start educating yourself on it and understand, as well. My best to you on this frustrating journey you are embarking on. But please keep reaching out to this community, they are awesome! And though idk much, there are many seasoned in their illness here who can help. All in all, everyone here is very supportive and caring! 🙏

[RobinGoch in reply to Hidden]

Oh thank you for all that - well the rheumatologist discharged me as soon as bloods came back with nothing - so I’ve had to be a pain just to get seen by him again, to discuss the ‘non-significant’ results ... so I must say I don’t hold out much hope that he’s going to help me work towards a diagnosis 😏 - but I will try and keep pushing...just feels like I don’t really know what I need, but that I’m not ready to accept all my symptoms without an explanation! Really appreciate the support though x

[Hidden in reply to RobinGoch]

If he’s already been dismissive, maybe switching this early would be a good idea? Idk your doctor, of course, but if he already discharged you after one failed attempt, it sounds like he really isn’t going to be helpful. I’m so sorry, that has got to be so frustrating!! Find someone who will take you seriously! Paul made a suggestion, he’s the one I would listen to. Best of luck and please update us on things.

[Paul_Howard Partner LUPUS UK]

Hi RobinGoch ,

Dr Yasmeen Ahmad is a Consultant Rheumatologist with a specialist interest in lupus based at Bangor Hospital.

[RobinGoch in reply to Paul_Howard]

Thanks - really helpful to have a name to suggest...

[KayHimm]

I think it is good that you are going in to discuss your symptoms and lab results. If you have some things pointing to autoimmune disease, you may not be discouraged but followed closely by GP.

Sometimes rheumatologists just give the yes or no with lupus. But if you have specific symptoms you want addressed, this is the perfect time to address them. You deserve explanations.

K

[Wendy39]

Hello RobinGoch

I am sorry for the delay in spotting your post. Not sure how I missed it.

Have you managed to get anywhere?

This pandemic unfortunately is having a knock on effect on every aspect of the NHS right now.

I notice that Paul has recommended a rheumatologist with an interest in lupus. That's a good start.

Have you taken a look at the information on the LUPUS UK website? They have a number of publications about lupus and the skin, lupus the sun, lupus and the kidneys etc.

Also, there is a search facility here on this site, so you can search for certain symptoms or medications etc.

I'm in South West Wales, so know the system here.

Happy to answer any questions you have.

Best wishes

Wendy