Am I going mad?

Hi all, I was diagnosed with CREST approximately 18 months ago, since then my condition has moved on at some speed. Recently, I was referee to hospital with breathing problems, ie shortness of breath upon everyday activities, I was diagnosed with lung fibrosis and mild enphersema, I was also told I had possible calcium deposits on my lungs. After searching various sites, I can t seem to find evidence of calcium deposits on the lungs with this disease, does anybody else have the same diagnosis? And was calcium deposits confirmed? I worry that they could actually be cysts, and that I may have a different disease along with the crest.

So confused, awaiting for the hospital to get back to me, 2 weeks later.

8 Replies

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  • I think you should phone the hospital department and explain how troubling this wait is to your peace of mind or ask your GP to chase up results. They should not be leaving you in suspense In this way with such potentially worrying and serious news. Hopefully their lack of response signifies positive news (i.e no news is good news) but still. Best of luck and take care.

  • Hello there, sorry to hear you have had such a bad time of late. No wonder you are worrying! I really wouldn't go searching on the internet for what other people may or may not have had. This is about what you have...your unique health problems. If the hospital are giving you a diagnosis then they need to explain it fully and confirm either way whether these deposits are calcium. If they are cysts then they will be able to diagnose that based on scans. I am not sure what you have had done but clearly they will be investigating further (one hopes) and being very clear about what you have and what they will do about it.

    Keep pestering your Consultant or GP so you know what is going to happen.

    All my best

    Lucy

  • All I can say is that in my long experience things come and go in cycles. Talk to your GP.

    Best wishes.

  • Studies are pointing at the acid reflux having a major impact on lung damage and dyspnea. Is your GERD being treated with proton pump inhibitors? If not, be sure to look into this.

  • Thankyou all for your response, received a !after from the hospital, seems they are going to do a "wait and see" policy, that's left me more confused. I have my rumy appointment on the 20th so hoping to get some proper answer then

  • Hi Joanneevans65 how did your appointment go - any clarity?

  • Hello Joanne

    I too have CREST syndrome. The C in CREST stands for calcinosis so these problems are to be expected. Here's what the other letters mean.. (I've lifted the following passage from a website).

    CREST syndrome, also known as the limited cutaneous form of systemic sclerosis (lcSSc) is a multisystem connective tissue disorder. The acronym "CREST" refers to the five main features: calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia.

    I experience all these symptoms. Sclerodactyly is the skin condition that accompanies the disease and telangiectasia is the rash. My symptoms first appeared with this awful rash. However, as time goes by you learn to live with it and manage the symptoms. I've had all these symptoms for some time and I'm still ticking along.

    Try not to worry too much - I'm afraid we're unlucky enough to have what we have and the only thing we can do is confront it and do what helps to make us feel more comfortable. I have good days and bad days and I'm sure you do too.

    Put a brave face on - we can always pop in here to have a good moan. Wishing you well. x

  • I have just been diagnosed with overlap connective tissue disease with one condition being limited systemic sclerosis (crest). They say I have two calcium deposits on my lungs I can't find anything about it like you. I get so out of breath. But I've been told my pah is fine

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