Guy's and St Thomas' lupus clinic?

[BubbleMonkey]

Okay so I'm quite certain I have lupus. Fits all my symptoms and the time frame and I can't work put anything else that fits as well as it does. I've started to broach the idea with my GP and will be seeing them soon following some blood tests. I've recently discovered there is a lupus clinic at Guy's and St Thomas' hospital in London and I was wondering if it would be worth just asking if I could be referred there. I know lupus can be a super tricky thing to diagnose and honestly I'm not terribly confident with my current rheumy.

So anyway does that sound like a thing that I might be able to do? Does anybody have any advice or experience with it/ diagnosing lupus in general? This is honestly so overwhelming and I just want to get to the bottom of things as soon as possible.

[Sara_A]

You can go to whatever specialist u want to esp if u are thinking of going privately?? You are entitled to can rheum at any time.

Unfortunately yes it can take several years for a diagnosis and it’s a very frustrating time and stressful as u feel that the drs aren’t taking it seriously and diagnose depression, m.e, anxiety and all sorts of other things!

I remember a specific gp said ‘yes I think u are depressed’ because I started to cry because she wasn’t listening and I was in such pain with my back, I just wanted to scream at her!

Keep going tho, we know our bodies and if something isn’t right. It can be a long journey but not always if u find the right dr.

Good luck!

[BubbleMonkey in reply to Sara_A]

It's an NHS clinic so I would be hoping to go on the NHS. Although I guess that would take ages so maybe I'd see about visiting a normal rheumy first.

I've already ended up going to a mental hospital cos I was starting to believe the it's all in my head thing. Going there helped me realise that it is most definitely not though.

[Lisalou19 in reply to BubbleMonkey]

Nice in a way to read these comments here regarding mental health . I was referred for an assessment after begging a doctor to help me. At the end of the assessment I was advised to carry on my fight, only I lost my fight in fear of being seen as mental.

I got my strength back in January and am back on my rollercoaster journey to find out what is wrong with me!!!!

[Dalilatm]

Hi!

My advice would be: go to a rheumatologist specialised in lupus. If you can go to St Thomas, great! They have a team that’s specialised in lupus. And explain to your GP the importance of being seen soon. Lupus can attack any organ, badly. It doesn’t wait. That rush/urgency and a great lupus team saved my kidneys.

Best of luck!

[BubbleMonkey in reply to Dalilatm]

Thanks for responding

I would be able to get to St Thomas if referred, but it probably doesn't help the whole sounding like I'm trying to self diagnose thing if I push for that first. It appears my current rheumy specialises in lupus to some extent so I guess I'll give them a go and see how they respond (it will be the quickest option). I think the lupus clinic will be my back up though (I will probably see if I can get to see them if I do get diagnosed too cos I imagine they've got a good idea of treatment plans).

To be honest I don't think I'll be able to accept that I don't have lupus unless I can get somebody who I can tell knows their stuff explaining to me why it doesn't match. And obviously if it is lupus I want to know I'm doing all I need to to help myself.

I'm glad to hear you got seen soon enough to save your kidneys. That's one of the reasons I'm so set on properly investigating lupus as a possibility. It doesn't seem too bad at the moment and I don't think it's affecting any organs, but I don't want to ignore things and end up seriously ill in a year or something cos I didn't push.

I'm still feeling a bit like a hypochondriac though so it's nice to get that bit of motivation from other people telling me it's worth investigating and I'm not totally crazy.

[Dalilatm in reply to BubbleMonkey]

sure! Follow your guts! And if you think there’s sth wrong, it’s worth a research. It’s your health and that’s priority.

Don’t feel crazy, but responsible for your wellbeing. If the final research says no lupus, nor any condition then you have a wonderful reason for celebrating! Good health!

X

[HeKe]

Hi BubbleMonkey,

I think I'm at a very similar stage to you. I started to notice more joint pain than usual last November. Since then my health has gone downhill. I sat with my GP in February after seeing him several times since January with a throat abscess, then weird temperatures, then an all over body rash. On this occasion my hands and forearms had become acutely painful. I said to him "I'm not that ill, but something is wrong with me." He agreed, asked if the rash on my face was normal for me and had bloods taken there and then. He told me not to worry, but of course I came home and googled "skin rash and swollen joints". Reading about Lupus was a lightbulb moment for me. I've always said my body overreacts to things! My blood tests showed inflammation so now we're on the journey to diagnosis.

My immediate reaction was to see someone privately for speed. I saw a rheumatologist in March but it was really unsatisfactory. His view was that I had a post viral rheumatic reaction following on from the abscess in my throat in January. As my joint pains were increasing from November, I didn't feel confident in his diagnosis. The intramuscular steroid injection he prescribed did not change any of my symptoms.

I have tracked down all the connective tissue disease specialists in my region but none of them undertake any private work. I am now waiting to see a specialist early in July. My GP has been helping me to manage my symptoms during the long wait. I've also accepted that, whatever the diagnosis, I probably have a chronic disease that will alter my lifestyle. I've accepted that i have to listen to my body and adapt what I'm doing on a day to day basis. Finally, I've accepted that the diagnosis might not be Lupus, but like you, I need to have faith in my specialist because there is definitely something wrong with me.

Try to be confident with your GP. You have a right to go wherever you want. You have a list of symptoms that indicate Lupus or another connective tissue disease so you'd like to go to the consultant/clinic that is most relevant.

Good luck and keep us posted!

Heather x