Sarcoidosis

[Ponderinganother]

Hello fellow mumsnetters!

I just wondered if there are any sarcoid sufferers out there? I have looked at past mumsnet threads and there do seem to be other sufferers on here but most of the threads are quite old.

I would love to hear from others suffering from this disease as I am struggling with it at the moment and would love to start a support thread if there are any takers.

I was diagnosed in April this year although I suspect it has been lingering for at least a year and half, if not longer.

Mine showed up initally with swollen lymph nodes for 6 months and then all h*ll broke loose .

I had a facial palsy followed by:
Swollen parotids
Swollen purple legs
Red and dry eyes
Dry mouth
Lumps in lungs
Chronic pain and fatigue and so on and so on!

I suspect I have neurosarcoid too and will pursue this at my appointment!

Anyway, hope to hear from others, swap stories, tips, treatment etc..!

Yoohoo!

Yeah me, recent diagnosis discovered as part of the follow up lung tests from a pneumonia last year.

Saying that, the consultant thinks that I've had it a long time- I've had recurrent uveitis over the last 15 years or so, as well as a case of Bells Palsy and lesions on my face a few years ago. Such an attractive disease!

I wouldn't say I have too many symptoms at the moment- my lung function has reduced by 25% but I can't feel it luckily. You sound like you're in a bad way atm

I've been on steroids since NYD- how bout you?

Hello Noel!

Thank you for replying! I have been on steroids since August last year. I started on 20mg and am now down to 12.5 although I havent seen any improvement in how I feel yet. What dosage are you on?

I am being treated by a chest consultant but he does not seem to know as much as I would like about the disease so I have decided to be treated at The Royal Brompton sarcoid clinic as at least they have seen more cases.