He had access to my ct scan I had done in hospital in feb when they thought I had a PE. He said I had ‘raging’ pneumonia at that time and was amazed no one had told me ! Anyway he said that I have crackling in base of one side but not the other which he said looked like progress from the scan. He said he couldn’t hear fibrosis? He looked at my hands and said they looked like ‘mechanics hands’ and I have some early finger clubbing. He has referred to a rheumatologist saying it seems to have ‘progressed fast’ even tho you are feeling better ? He said they need to rule out autoimmune and then start treatment depending on results . My heart rate was fast but I was super nervous and my sats on arrival were 93 but went up to 96.
im just not sure if the outcome was positive or not? In my self I’m not overly tired or overly breathless . It’s only my sats and skin that are really worrying me !
Thank you for reading xxx
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Bronte007
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Your consultant sounds really thorough, which is what you paid for. The investigations will help the medics work out the best treatments for your conditions, which will be a positive step forward. Just remember, you will be the same you as you are now, whatever the label the final diagnosis gives you. Wishing you all the best
It sounds like your consultant is making sure there are no other conditions causing the lung problems. I have bronchiectasis and I was tested for all the auto immune diseases that may have caused it, I was negative for all but one of them, as I tested borderline for rheumatoid arthritis, but later tests ruled this out too. xx
It is a known fact that bronchiectasis can occur with childhood infections; mine happened when I developed whooping cough at the age of 37. An after-cold cough would linger on and off after a cold for over 30 years, during which time I was treated with prednisolone. A GP referred me for a chest check-up and it was found that I had mild bronchiectasis, likely from the whooping cough, but it only showed up on an HRCT Scan. Over the past years the usual x-rays only ever showed normal!
I was diagnosed with rheumatoid arthritis years before the bronchiectasis which they thought was asthma. It sounds like you have a good consultant and he is looking into things for you . It takes a while to get over pneumonia so be kind to yourself x
Hi there, I'm recently diagnosed with scleroderma. I too had a pretty poo time on the nhs and went privately in the end. I'm glad that you have a thorough consultant who has referred you to a rheumatologist.
Hopefully they will be thorough too with the tests: extensive blood work, lung function test, chest xray, ct scan, nailfold capillaroscopy, and will look at your physical symptoms too (skin, mouth etc).
My obvious symptoms started in 2020 with raynauds- but now realise it's been active for quite some time before! I used to get my nails done all the time and the technicians used to comment on how hard and dry my cuticles were. I put this down to getting my nails done frequently. I don't get them done as much, and the skin is yellow and thick. I also have the specks that you refer to in your other posts as well. (Also thought they were down to getting my nails done). Those are broken capillaries and the nailfold capillaroscopy will confirm that. I also had swollen and puffy fingers - but thought it was the heat as I took I running. 😅
Two years on, my disease has progressed really rapidly and I have skin involvement - tightness on my wrists and hands and realised my fingers have begun to curl in and I can't make a full fist. My blood work also came back SCL70 positive.
Thankfully though, I don't have any organ involvement and taking hydroxychloroquine daily to prevent any further progression, as that is key. I'm now back on the nhs at the scleroderma clinic at the Royal free.
Between now and your appointment, i would suggest keeping a digital log of anything weird and wonderful you are experiencing or have experienced in the past. Try to create a detailed story for them - even with things that you might now think are relevant. (I use the Keep app) These will help the rheumatologist form a picture of what's been going on in your body.
Good luck and crossing fingers for you. You're in good hands and surrounded by so many knowledgeable people who will help you ask questions and be the support you need in crucial times. Take care.
Hi Bronte, glad your journey to a proper diagnosis has begun.
In terms of whatever label you are given, hang on to the fact you are feeling well. When I had my IPF diagnosis, my consultant was a little surprised how much exercise I do and how far I was (and am) walking, bearing in mind my lung function was down. Needless to say my brain went into a bit of a snowstorm.
My OH (who is a very calm man, asked me how I felt the day before the diagnosis (absolutely fine), how I felt walking into the appointment (nervous, but absolutely fine), and physically, how I felt at the moment we were talking (physically fine, mentally a bit bruised).
So, my strategy is to keep well, keep moving and should I have a time when I fell less well, act promptly to sort it out.
I had my latest lung function test yesterday. Last time, the technician was content to tell me my results. This one couldn't or wouldn't. Needless to say I was a bit irritated, but do I fell less well than when I walked into my test? No. I'm fine.
I see my consultant next Friday, and I'll be a bit nervy before that, but whatever, I'll keep myself as well as I can. I'll keep myself moving, and focus on my wellness, not necessarily the stats.
Please do focus on feeling better. Positivity matters.
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