Ct scan

[BabyOleg]

Has anyone ever had a HDCT chest - just wondered how long I should expect to wait for the results it was put through as an urgent scan and only waited a week to have it done. Had it done last Friday.

[MEGS53]

HiI've had several hdCTs of my chest 😢

Your consultant should defo have the results by the end of this week, at the latest.

Whether he contacts you with them is another matter, unfortunately.

Good luck, please let us know how you get on.

[BabyOleg in reply to MEGS53]

Thanks megs, hope your ok. I’m worried it has picked up on somthing because Iv been increasingly SOB this week. Which has never happened to me before.

[MEGS53 in reply to BabyOleg]

Try not to worry, but easier said than done. Things are taking so much longer with Covid.

Perhaps phone the consultants secretary by the end of the week if they don’t contact you.

Hugs 🤗🤗🤗🤗

[BabyOleg in reply to MEGS53]

That’s a good idea x I will wait till Friday and then maybe send her a email x

[MEGS53 in reply to BabyOleg]

Good 😊

Don’t think she’ll give you the result but insist that the consultant contacts you ASAP.

Hugs 🤗

[BabyOleg in reply to MEGS53]

I’m scared to be pushy, incase they get annoyed at me 🤣

[BabyOleg in reply to BabyOleg]

How is your chest - x

[MEGS53 in reply to BabyOleg]

I still get SOB, for no apparent reason - my XRays and CT scans have never given cause for concern, even though I have crackles at the base of both lungs.They just keep an eye on me 😂😂😂

Sometimes we just have to go with the flow as science doesn't have all the answers for complicated people such as us.

Hope all goes well for you, please update us, xxx

[BabyOleg in reply to MEGS53]

I guess in a way that’s good, nothing sinister. it just doesn’t help the situation. How do you cope with your shortness of breath, this is new to me and it scares me when it happens especially when I wake up in the middle of the night with it - atm I feel like my body is under a lot of stress Iv managed to just about get up to go to the toilet from the sofa each time other than that I’m completely drained and my entire body hurts today 😩 it’s by far the worst I have felt all year

[MEGS53 in reply to BabyOleg]

Hi BabyO, I hope you're feeling a bit better today.

I haven't checked on your earlier posts, but I guess you're just starting on your journey to dx and that you're much younger than me (nobody would call me baby 🤣). As you progress you develop coping strategies to manage your symptoms and disabilities - whether that's reducing hours at work, or getting your partner to do more housework when you're having a bad day. This is the way I - and countless others - manage to cope with SOB and all the rest of it.

The peeps on this site have a wealth of knowledge that we're happy to share if and when you need it. But we can't replace your Drs, so be sure to ask them to explain any of your concerns.

Take care, 😘

[MEGS53 in reply to BabyOleg]

Sometimes you have to be pushy, otherwise you get left behind!

🤗🤗🤗

[KayHimm in reply to BabyOleg]

Just be honest with the receptionist. Tell her you are nervous because you have had trouble breathing and in the process of being worked up for autoimmune disease — and if it is possible to get the results, you would appreciate it.

If that doesn’t work, 💰, 🍫 and 💎 usually work.

Waiting is the worst. 😫

[BabyOleg in reply to KayHimm]

Haha money diamonds and chocolate 🤣🤣

[KayHimm in reply to BabyOleg]

😜

[Lizard28 in reply to MEGS53]

I had one a few years ago, I was in hospital at the time, it took three days to eventually get me slotted in. I had the scan around 11am the doctor came to see me at about 4 with the results. They thought i had pneumonia but after the scan it was pneumonitis, I was sent home that day with high dose of steroids, hate them but I could breathe again. It’s very scary not being able to breathe. Hope you get your results through quickly. X

[BabyOleg in reply to Lizard28]

Thanks hun. I’m going to email the secretary tomorrow if I haven’t heard anything - waiting is the worse. X

[Roarah]

I am in the states our scans are read within one working day and posted on the patient portal automatically in 7 days if the doctor does not release it before had. They are usually uploaded to my portal within 12 hours if scan is done m/T/W/Th. Hope you results are good. Scanxiety can cause lots of SOB and other symptoms in addition to your preexisting symptoms.

[BabyOleg in reply to Roarah]

Thanks hun, I don’t have a patient portal only a gp access record which never shows scans etc but lucky really as I would never be able to understand what I am looking at anyway haha. Yeh I do wonder if the SOB is hidden anxiety. However the whole point of this scan was because my chest is increasingly worse over the last few weeks

[Roarah in reply to BabyOleg]

The reports are not too hard to read the radiologist usually simplify them for the ordering physician. Good luck. The humidity and heat also affect my breathing sometimes. I hope it is just a temporary thing! Xo

[Simplysusieb]

I had shortness of breath that got increasingly worse over the period of 3 months in 2019. Went several times to the emergency room and because they were told I have lupus the first two times they said it was inflammation and a glare and put me on steroids. The third time they finally did a CT scan and found several bloodclots in my left lung. I then had blood work to confirm that I have lupus clotting disorder and I am on blood thinners for life. NEVER feel you are being a pest or pushy if I had not kept being pushy and gone back I wouldn’t be here today to write this reply. It is your life and you are really the only one who knows when something isn’t right. I still have chronic sob and like most things with lupus we learn to cope. I wish you a speedy road to discover the reasons behind your sob and hope you feel better soon.

[Olderkitten]

Hi BabyOleg. I had the same done and it took a couple of days for doctor to get results.

[BabyOleg]

I had the results today! All clear!! Yay!! That’s the first bit of good news all year and the thing I was worried about the most! Even tho I have a chest infection atm and It’s wrote me off for the last few days.. at least its treatable with abx and will go away where as I was so scared it would show somthing serious.

Is it normal for me to have LRTI every year? Or is this part of being unwell and will probably just become part of my life or am I just damn unlucky even with wearing masks managed to get coughed or sneezed on by a ill person at some point lol

Got the eye hospital on Tuesday been referred to uveitis clinic by the rheumatologist . That’s my next big appointment now.. is that even a lupus related thing? Eyes? Except the whole dry eye thing I know about.

When will it end.. 😂😩

But I’m still on top the world I have a healthy chest and lungs currently!

[KayHimm in reply to BabyOleg]

Great news about your chest! Yes, uveitis can be autoimmune. Glad you getting evaluated by ophthalmologist.

Hang in there 🍰!

xk

[MEGS53 in reply to BabyOleg]

Excellent news!

[BabyOleg]

So another update Just spent the last 4 hours in the eye hospital at my appointment.

They think I have episcleritis and also wondering if I have a AI crossover? (Think that’s the term they used)

He wants me to have a blood test for myasthenia gravis.

(Never heard of this either)

I swear every time I got to an appointment I get something new thrown at me 😂

Anyway - more bloods and more tests. What’s new 😂 and back in 3 weeks.

Hope everyone is ok and having a nice week x

[KayHimm in reply to BabyOleg]

You are too much for the NHS doctors and you think we are going to have insight?!! 😅 I am very sorry you have to go through all this but looks like a light at the end of the tunnel.

The immune system is complicated and we are all individual. You may have an unusual mix of autoimmune diseases - think that is what they mean.

You are proof that rheumatologists do not rely solely on labs when they see concerning clinical signs.

Gotta’ laugh trying to imagine your doctors’ attitudes toward you. Do they act confident or do they admit they are puzzled and need time? Hope you see a senior rheumatologist. 😅

I hope you aren’t too discouraged.

😘 k

[BabyOleg in reply to KayHimm]

😂😂😂 once again... your humour has made me giggle!

I feel like the opthamologist was very confident today - he was like I will speak to your rheumatology to discuss her thinking.

They actually tend to get all confident and then someone suggests somthing else and they put there head in there hands hahaha!!

My rheumatologist is a lead I think. So that’s got to count for somthing haha!

I mean imagine what’s gonna happen at dermatology - I’ll probably be diagnosed with some super rare skin disorder that no one has ever even seen before and throw everyone off path again😂😂😂 ( that’s the way this is going) just for the LOLs 😂😂😂😂😂😂😂😂

I got to keep up the baffling shirade now haven’t I.. why stop now hahaha!!

If anything - I hope my story can give people a glimmer of hope that it’s not just about lab tests, some doctors/consultants actually do work with the physical symptoms that are right in front of them.

I do feel like I’m coming closer to a final desision... I mean - even if it’s multiple things- it’s better than nothing.

[KayHimm in reply to BabyOleg]

It does make sense that the ophthalmologist would be certain of what she saw. And the dermatologist could be definitive too. It’s the poor rheumatologist who has to tie this together with no positive labs. It isn’t the usual.

You have a good attitude about this. You know they are putting the detective 🎩s on. It is sad but when they don’t see signs of inflammation, they do seem to end the work up from a rheumatology perspective. I guess it is up to the GP to keep an eye out and report if things change. Hard on the patient. They should explain things better.

Check in 🔜

Xk