SEEKING ADVICE WHILST AWAITING DIAGNOSIS

[Rockgrrl]

Hi, I am a newbie to the site and it would be wonderful if I could get some advice please. I am in the UK (Scotland).

I had a bad swollen gland in my neck last December and, following a myriad of blood tests for low platelets, it looks like two of the blood tests ( one of them the double stranded DNA one) are pointing towards lupus.

I had an appointment for a Rheumatologist on 30 March but that has, obviously, been cancelled. Unfortunately, because I am a new patient, the Rheumatologist won't do a telephone appointment.

I am suffering with several symptoms ( fatigue, brain fog, sore joints, mouth ulcers, dry eyes and skin ) and, whilst of course I realise that all resources have to be directed to those most in need and that I am rightly way, way down on that list it is all getting a little depressing.

I am wondering whether my GP has to get an official diagnosis from the Rheumatologist before I can start any ' lupus medication' ? Do you think there is there anything at all that I can do to help with the process? Many thanks, stay safe!🌺

[daphnedaphne]

Hi Rockgrrl. I would speak to your g.p about this + ask if there is anything you could do. If you are in the situation to be able to pay then you could possibly see if there is anyone private around that will look at your case. Unfortunately they really do need to see patients in person to do the physical exàm. There are quite a few different reasons for blood abnormalities so I imagine your Rheûm would be wanting to get their ducks in a row before prescribing. Worth checking in with your g.p + explain how you are feeling. They may be able to have a phone chat with the Rheum. Good luck!

[Rockgrrl in reply to daphnedaphne]

Thank you!

[PMRpro]

Unfortunately it isn't just a case of you have lupus, here, take this. There are different drugs for different purposes and many can only be approved by a hospital consultant after being chosen on the basis of the whole clinical picture. There will be a lot more tests to be done - it is a very complex pathway to a full diagnosis.

[Rockgrrl in reply to PMRpro]

Thanks for this!

[Rockgrrl in reply to PMRpro]

Thanks for this!

[whisperit]

Hello Rockgrrl

That's a frustrating and difficult situation, but as others have said, there probably isn't a short cut to specific medication. Do speak with your GP though to see what can be done. In the meantime, it might be wise to avoid the sun (which can cause flares in lupus-type conditions) and do the common sense things to stay as healthy as you can. Be aware that "immune system boosting" supplements like echinacea are probably best avoided as in lupus-tyoe conditions, they too can cause a flare - our immune systems are a little *too* lively for their own good!

Maybe also keep a symptom diary so that when you finally get to see your rheumy, you'll have a really clear history to help with the diagnosis x

[Rockgrrl in reply to whisperit]

Thanks!

[daphnedaphne]

It could be worthwhile to start an anti inflammatory / autoimmune diet + food diary. Also a symptom diary. If you get any weird rashes etc you could take photographs. Things like this might help the Dr along when you do finally see them. Just a thought.

[Rockgrrl in reply to daphnedaphne]

Thanks, that's a good idea, I'll get onto it!