sarcoid

[twizzylizzy]

does anyone have sarcoidosis? I was diagnosed 2yrs ago but have been having a lot more symptoms in the last few weeks

[peege]

I am so sorry I canot help. I still have L plates.

Someone will be along very soon who'll help. Failing that the BLF staff are on the end of the phone at the help line and the number is ........... somewhere on this site too (if not someone will write it up for you).

All the best - I look forward to reading your answers. P

[twizzylizzy in reply to peege]

awww well tyvm for answering me anyway hon if someone does know the number I will ring them thanks again x

[phillips1]

Hi Twizzylizzie

The number is 03000 030 555. The helpline is open 10 - 5pm The nurses are very good at answering questions.

Bobby xx

[peege in reply to phillips1]

Thanks Bobby, put it in my phone now for future ref xx

[sassy59]

Hi twizzylizzie, I am carer for my husband Pete who was diagnosed with sarcoidosis 22 years ago. This is a horrible disease but can be managed well with the right help so I do hope you manage to find that help. Pete, on the whole, does not do too badly but do take the advice of Bobby and ring the helpline. Hope things work out well for you. Let us know how you get on. xxxxxxx

[Mocarey]

Hello Tizzywizzy I was diagnosed with sarcoidosis 43 years ago. M

[appyalison]

Hi Tizzywizzy, I've been having a bit of a time of it. Long story but the short of it is that after a lung wedge resection on 9th April, I still do not have a definitive diagnosis. Bristol said not sarcoid, Gloucester said sarcoid. I asked fr the slides to be sent to the Royal Brompton. Been waiting for results since 10 June. I strongly suspect it is sarcoid and if so I've had it for more than 20 years. I am sick of the painful joints, painful muscles, breathing difficulties, chest pains, pains in the back, pains in the armpits, worsening eyesight, cramps, tiredness, anaemia, ulcerative colitis - you name it. If it is not sarcoid then I must be really unlucky. The blf helpline is great. You could try sila.org.uk. they are a sarcoidosis charity and they have the latest information on the condition and treatments. There is a lot of misinformation out there and few consultants seam to know much. Hence I'm struggling to get the help I know I need. Sila are good at telling you what you need. Good luck. Alison