Sarcoidosis

[Lolimax]

Hi. My lovely DH has just been diagnosed with this. Whilst I'm so relieved it's not the lymphoma they thought it was, I also know he really isn't well. We're waiting to be referred to the specialists and I've done the Dr Google thing but has anyone on here got it to share their stories? Hardly anyone in RL has heard of it.

Anyone??

I don't know much about sarcoidosis. A friend of mine has it and has had to have surgery to remove one of the 'lumps' caused by the sarcoidosis and is currently having another lump investigated.

She has been told that the condition shouldn't cause her undue worry unless it develops in her lungs, so she is monitored regularly.

She has been assured that she won't die of it! She is now pretty relaxed about the whole thing.

As I stated above, I only know anecdotal stuff about sarcoidosis which my friend has told me. Try not to google but why don't you read about it on the nhs website where you know you'll be reading accurate info.

I'm sorry you and your Dh are having a stressful time and hope things improve soon.

DP was diagnosed with this almost 2 years ago. Like your DH, they also initially thought he had lymphoma. The initial severe flare up lasted nearly 6 months.

Two years on he still gets flare ups. It seems to flare up in different parts of his body. So far we've had eyes, knees, rib muscles as well as the lungs. He is generally very fit so his lung function is fine.

His consultant thinks that he has the type which should go into remission within 4 years. He has regular check ups and monitoring but (touch wood), if things continue as they have then he will be on yearly check ups from the next one.

I notice that he catches more minor illnesses than he did before and he definitely tires more easily but there is a definitely steady improvement over time. At present he does not need any treatment.

I found this organisation very useful for information.

SILA

Thanks Scarlett. We know it's already in his lungs they need to test how much damage and if it's affecting his heart. I'm sticking to 'good' sites like the NHS and the British Lung Foundation.

That's great Waiting. You are the first person we've come across. DH is unable to work atm as he's too ill and unfortunately where he works in a plastics factory so we aren't sure how that will affect him. We've already checked that website out and found it useful.
We've both got 'unusual' conditions. And both are hidden. Has your DP found it hard to come to terms with? Mine is neurological and I know it took me a while to almost grieve over the person I was and who I am now. I've tried explaining that to DH but because a lot of this is the unknown at the moment I'm not sure he gets what I'm on about.