Advice on appointment

[catblue1865]

I've just been referred to bath rheumatology. This is a final attempt to gey a diagnoses after first trying in 2006. I've asked them to see if I have undifferentiated cognitive tissue disease. Does anyone have any advice on how I can prepare for this appointment?

[CarolMcl]

Do you mean connective tissue disease?The best thing to do is get a diary/notebook and write down everything you feel that's happening, I would also note what you were doing at the time to see if it's related. The plus side of making notes is that you have what you want to say in front of you so you would be less likely to forget want you want to ask 🌹

[Lizard28]

hi, just take some notes but when I went for mine probably about 12 years ago now, it was the rheumatologist that did lots of writing and asked lots of questions, she was interested in all the weird illnesses that led to getting kept in hospital over the years. She arranged lots of blood tests as well. It took about 9 years to get a diagnosis of MCTD and then last year skin lupus. My bloods only ever showed a very high RF, high ESR. My Rheumy was a stickler for blood tests and if it didn’t show in them I didn’t have anything. It’s not since the lupus diagnosis came up and my lymphoma that I have actually been taken seriously. I still have the same Rheumy all these years but at the beginning I felt like a fraud as I had no proof I had anything. It’s a waiting game unless your bloods show anything. Good luck with you appointment and the one thing I’ve found, they don’t like to be told what you think you have, let them do the diagnosis.

[StriatedCaracara]

I went private for my UCTD diagnosis.As well as symptoms of SLE I had a strong positive ANA...

(but ENA and other 2019 SLE ACR / EULAR immunological blood criteria were negative)

I would be interested to know how you get on at Bath.

The NHS may be good at reviewing those with positive bloods and few symptoms but when the situation is reversed....

In the past I feel I could have got help on NHS but now criteria, pathways their priorities exclude me.

The fact that my ESR does not go up much means even A&E and GP appointments miss things.

[catblue1865]

Thanks for advice

[dg70]

I go to RUH Bath. If you are going there then it helps they are a lupus centre of excellence. Make sure you take a urine sample, they should ask for one and if they don't the receptionist will show you where to put it. They should do full bloods on your first appointment and do your blood pressure. Take a list of symptoms and dates and even pictures. Sometimes everything goes out of your head when you get with the consultant and you only get 30-45 mins with them which goes fast. Be prepared for a bit of a wait pre-appointment. I have waited 45 mins for my appointment once. It's comfortable and modern in there and I always take a drink in case there's a wait. Hope all goes well.

[catblue1865 in reply to dg70]

Thanks for your encouragement.

[Poshcards]

I have been an inpatient and out patient there for over 31 years now, its a wonderful place, hope you get to see Dr Ellie, she is absolutely lovely and the head one. Good luck and dont worry xx