New here - what should I discuss with my rheumatologist?

[TeaandToast94]

Hi I've been watching this forum for a while now and already have seen so many great posts from a knowledge point of view, but also in knowing that I'm not alone!

This is my first post and I'm wondering, in your experiences, what should I discuss with the rheumatologist for my initial consultation?

As a bit of background, I have been battling symptoms for years now. I'm 27 y/o (feel like my body is a large number of decades older!!), a mum to a 5 year old and work clinically in the medical field (although rheum isn't my specialism evidently - ha!)

I've been back and forth to a number of GPs over the years about varying symptoms, but they've always been looked at in isolation or they've openly said "I haven't got a clue, come back if it still happens" - which of course it does still happen but I've lost all confidence in them. It's absolutely ok to admit they don't know, but to send me on my way makes me despair, whereas a proactive "I'll ask my colleagues" or "I'll look in to it" would make me feel 100 times better!

For the past 14 months, the GP I've been dealing with has been trying to tell me my symptoms are all in my head and asked if I wanted anti-depressants. (I swear some clinicians see that you've been on ADs before and immediately see you as some sort of ticking time bomb!). She has even said to me "If I could prescribe you 2 weeks off to sit in your garden then I would!" After complaining about her, I got a different GP at the same practice who seemed really interested and empathetic at first but quickly couldn't be bothered and refused to run any bloods depending on my symptoms.

Fed up, I then went private for an autoantibody screen which yielded results which my GP refused to acknowledge. Prescribed me 4 months worth of folic acid saying I was folate deficient (yes, the bloods did show this, but he completely didn't care about my antibodies) and sent me on my way. I've been on the folic acid about a month and a half now to no improvement. Which in a way I'm thankful for as it shows I'm not going mad and what I've been saying all along appears to be right. But also frustrated that all my issues aren't caused (and can therefore be treated!) by something so simple!

I saw a private GP the other day who was honestly the best doctor I've had the pleasure in meeting for a long time and I have booked in with a rheum she recommended to me for an initial consultation at the end of next month. Realistically, I don't think I'd be able to do the whole care private and I know at some point I will have to refer back in to the NHS. But I'm hoping this initial consultation can at least give me some direction or answers.

Sorry for my lengthy post and thank you for reading if you have! Are there any things that as a patient you would recommend discussing or asking on that initial consultation? As in my head all I want to know is if he can help me and if I'll ever feel better!

[Insomniacette]

TeaandToast94 I'm so sorry - it's just awful that you need to battle all of this. If I've understood you right I think there are two parts to your situation:

Part 1: Your symptoms

Part 2: How to get the care you need on the NHS

I would do this in that order. So for Part 1 Your Symptoms the first thing I'd do if it were me is sit down and write down all my health questions. The symptoms that are happening and all the questions I want answers to. Then I would order them. Often the questions about your symptoms are past, present and future too so I'd list them all out.

For Part 2 I'd outline the main difficulties you've faced in getting treatment on the NHS and what you'd like to happen. I'd then ask the private rheumy if he or she can advise/help with any of it at all. It might be your private rheumy could write to your GP and say you have lupus and need to be referred to a rheumy on the NHS...

Remember to take all your blood results with you. If you're able to it might be worth emailing them to the private rheumy ahead of your appointment so he/she can look at them before you turn up. If you have a clear outline of the questions you want answered you could also possibly email them to the private rheumy ahead of time too...

Obviously in an ideal world you'd only have to go through Part 1... Sigh.

Sending you supportive hugs and I hope it all works out well!xxx

[jimbo1605]

I am so sorry about battling the system. Unfortunately your story is very common. My wife before being diagnosed was passed from pillar to post and prescribed anti depressants.

My suggestions ;

1. Get a copy of the bcr criteria for diagnosing lupus. This includes both symptoms and test results.

2. Go to a rheumy who knows about lupus. Preferably one who specialises in lupus. The lupus centres of excellence are a good starting point.

3. Don't give up and this forum has many people with experience just like your own

Best wishes

[TeaandToast94]

Thank you both! I've seen so many stories like my own of people being ignored when it comes to getting a diagnosis. It is almost like some of our doctors think we want to be ill, which of course isn't the case.I've made a list of my symptoms, which the doctor the other day took and formed in to a really well written letter to the rheum I'll be seeing, and my current GP. When I read it I almost cried due to how well it explained everything I've been trying to get them to acknowledge.

Thank you for your support, I think as the appointment gets nearer if anything springs to mind I'll jot it down to discuss with him. If I don't write it down, I won't remember as I forgot the word for 'elbow' the other day!

😂

[Hidden in reply to TeaandToast94]

You’re entitled to be heard and treated, don’t give up EVER 😃

[JCZW]

Hi TeaandToast94 I totally agree with what the others say. I was diagnosed in August with sle lupus after 7years of backwards and forwards to gps. During that time I saw some good and bad doctors experiencing what you have, eventually I was referred to a rheumatologist who was amazing and they prescribed lots of different medication. It helped at first but them my body rejected them. I was then referred to Southampton rheumatology who ran tests and confirmed lupus. It was a very long journey and I still have a long way to go. I truly hope you get the help you need.lots of hugs to you🤗🤗🤗🤗

[TeaandToast94 in reply to JCZW]

Thank you it is certainly a very drawn out process isn’t it, especially with it being an invisible condition!Thanks for your kind words, I hope you’re doing better soon ☺️