Sarcoidosis

[Aimsmum]

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I'm really sorry to hear about your mum - her sarcoidosis sounds awful. I have mild sarcoidosis but it has never really affected me too much and has been dormant for five or six years. Maybe her condition will stabilise too at some point. Mine got to a point beyond which it never progressed and I barely even think about it now.

Sorry I can't be much help but I really hope she improves soon. It must be a nightmare for her.

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OK last chance bump - anyone at all - before I give up?

I had a friend many years ago who was very ill in hospital with a bizarre mixture of symptoms. She was eventually diagnosed with sarcoidosis. I think it's an inflammatory disease of the soft tissues, kind of like arthritis is inflammation in the bones. I'm not sure what medication she had but she was very poorly for a long time before making a gradual recovery. I'm sure treatment is much better nowadays and people would recover sooner now. Hth.

My husband was diagnosed within the last year. He had a bad cough that just wouldn't go.
He's had regular chest x-rays and a bronchoscopy, and at the moment requires no treatment. They have no idea how long he may have had it although they are wondering if it is the cause of a heart condition he had about 4 years ago.

He got some good info from the British Lung Foundation.

Hope that helps.

My brother-in-law was diagnosed with this about 7 years ago. In many ways it was a relief as initially we were told it could be Hodgkin's lymphoma. He had really bad swellings in his groin, appalling skin, but only went to the doctor when he was vomiting daily. He spent some time in hospital awaiting diagnosis but since then has been on medication and leads a full and active life. As i recall he had to make some dietary changes but not too bad.

Thanks everyone for your replies.
I will have a look on the British Lung Foundation website, thanks for that.
I think the main issue is that my mums doctors has been very unhelpful, although she is in the process of moving to another surgery, so hopefully she will get some better advice/treatment from them.
Do you recall what dietery changers your bil had to make yo-yo by any chance.
TIA

Mentioned your post to dh and he said that UCH gave him the best info and they have a website. Not sure what it is but if you Google University College Hospital London sarcoidosis it should come up. He said it was the most reassuring stuff, realistic but stopped him thinking he was either gong to die or at least not be able to live life anymore.

Thanks RudolftheredPOSEYreindeer I did a google search and found the link. I will pass it on to my mum.. Thanks for your help.

Bump for yoyo or froot
Yoyo Do you know what dietary changes your bil had to make?
Froot do you know what alternative therapies your brother tried.
Thanks both in advance