A&E or not

[Staceylouise90]

Hello guys,

I posted a post last night relating to my current situation which seems to be getting worst a lot today.

I have a lot of issues over the years, with chest pain I’ll see which hasn’t been relating to anything.

Last 6 months I’ve had a bad chest, coughing up blood along side pain in arms and legs. Can’t breathe well at all... my current symptom today is pain when breathing in.

I saw a respiratory consult 2 weeks ago and an X-ray showed my left lung has some thickening ( Could be scarring ) and narrow airways. She ordered a ct for 27th November.

Then Sunday happened this episode of feeling ill came back with a bang, I called my gp for results from my sputrum as respiratory was confident I had an infection, my gp called me Monday evening and said she ordered some tests 6 weeks ago and failed to tell me I came back positive for ANA and dsDNA. She then passed these to the respiratory consultant yesterday and had a call this morning we an urgent CT for Monday. I went to the gp this morning ( different doctor ) he said with my results and what I’m displaying is most likely lupus, he has giving me Prednisolone steriods to help in the meantime. He said my respiratory consultant will likely refer and speak to rheumatology if she thinks there connected which the gp said it maybe attacking my lung?

Anyway my question is... as the day has gone on I’m struggling and the pain when I breathe is getting unbearable along with the pain in arms, legs and stomach plus this banging headache. I explained all this to the GP but I think his unsure what to do with me.

My question is has anyone been to a n e before a diagnosis with your systons and if so did you get any help, I feel like my body is shutting down. I have a 3 year old and at university I cannot be a mum or do uni this week and I’m struggling to even move. I just don’t feel normal and starting to freak out a littl. I just don’t want to go a n e and be looked at like a weirdo and nothing happens( this happened before ) I guess I have these tests to back me up but I don’t know any help would be great ! Xx

[Staceylouise90]

Hello Phillip,

Yes sorry a&e.

Not to get a diagnosis, it’s the pain when breathing in my left side I’m concerned about, I just don’t know whether they’ll see the results and say lupus and nothing they can do or give me, or I continue to feel this bad untill I get a referral.

My GP is passing the buck into respiratory department he said for them to make the referral as it’s quicker, I have a left a voicemail for them today, regarding the pain and the suggestion the GP is made, do you think I shall call my GP and ask them to make an urgent referral, can I request this?

Many thanks

[Oshgosh in reply to Staceylouise90]

Have lupus,and A n E is the last place I would go..they aren’t interested in people with lupus.im having a bad time with my lung condition and lupus.luckily M GP is helpful

[Staceylouise90 in reply to Oshgosh]

I know and that’s why I’ve been so reluctant to go, regardless if I can breathe or not. Could I ask if you don’t mind what issues you are having with your lungs, and how did you find out you had lupus. Many thanks x

[Oshgosh in reply to Staceylouise90]

Have got Non Specific Interstitial Pneumonia.this was diagnosed last year,some of my bloods were off,I was given a diagnosis of lupus this June,after loads of tests. It’s been a rollercoaster to be honest.

Having A bit of a rough time at present.hoping things improve.

I hope the steroids start to work for you

[Staceylouise90 in reply to Oshgosh]

Thank you for you advice and I hope you start to feel better soon! It’s nice to see on here people are dealing with similar things and that there are people going through similar things x

[Staceylouise90]

I was giving some good advice, to see my GP which I have and it defiantly sounds like SLE, my gp doesn’t seem to be acting towards the right direction and I’m just concerned with what’s happening to my lung it’s getting worst. Many thanks

[Oshgosh in reply to Staceylouise90]

If you are under the care of a respiratory consultant you may get an appointment faster.

Before Inwas diagnosed with lupus etc last y ar,I became increasingly unwell.

I ended up being blue lighted to A n E with breathless ness++

Was n resus for 4 hours.

Was in hospital for 11 days.

Was then referred to centre of excellence,who diagnosed my lung condition and lupus -eventually after loads of tests scans etc.

[Staceylouise90]

Thank you, hopfully these steriods will kick in soon and I will get to speak to my consultant tomorrow for respiratory once I do, I will see her plan and then call my GP and demand an urgent referral, let’s hope in the meantime this doesn’t get worst. Thanks for your kind words. Xx

[KayHimm in reply to Staceylouise90]

The rheumatologist would probably refer you to a pulmonologist. He is the expert on how autoimmune disease affects the lungs. So you can feel you are in good hands.

I suspect you will be a priority to get a rheumatology referral. But in your case your immediate and most serious symptom is being addressed by a doctor with a lot of experience.

When are you seeing the pulmonologist?

K

[Oshgosh]

Perhaps you could contact your GP again

[Staceylouise90 in reply to Oshgosh]

Thank you, I plan to do this first thing tomorrow. Xx

[Angie245]

In my experience A&E is not helpful I went in the beginning when I suddenly couldn’t walk I was petrified. Luckily I had a dr who’s sister suffers from Lupus. She was lovely but frank and honest there just isn’t anything they can do there. I’ve been under rheumatology since March now and have direct lines to the specialist nursing teams who can admit if they think it needs a hospital stay but to be honest although the flares are agony and scary I’ve never needed it. You should feel the benefits of the steroids soon if it is Lupus related in my experience. My GP has been with me from the start and I always find him the nest person to go to. I hope this helps and you feel better soon. xxx