hi is there anyone online that can talk to me about sarcoidosis plz?

[dilly20]

hi is there anyone online that can talk to me about sarcoidosis plz?

[MarieW-F]

I have sarcoidosis. I can try and help.

[dilly20 in reply to MarieW-F]

hi ty so much for replying i am having a problem with getting anyone to help with my breathing the specialist seems to think that its not that bad but im very short of breath a lot and i have soooo many other things im so very tired all my joints ache im in pain every single day but i feel im not getting any help is this normal ?

[MarieW-F in reply to dilly20]

Ask to be referred to the Brompton. They are the leading experts in Sarcoidosis. You have the right to request a referral.

Being short of breath can be down to lots of things. I had pulmonary physio that taught me how to breathe properly again which helped. Also anxiety can be a big factor too. Being short of breath can make you feel panicky which in turn can make you feel short of breath - a vicious circle. Are you on any medication at all?

Its a horrible disease. I am currently in remission - have been since a couple of months of diagnosis but I remember the tiredness and painful joints well.

Its also a misunderstood disease, no offence to others on here but its relatively rare, theres been little research into it and I had only heard of it because I watched House.

You could als try speaking to one of the nurses here. Also SILA are the sarcoidosis charity. if you google them you will find a world of sufferers at your fingertips who will have lots better answers than me.

Marie x

[dilly20]

hi ty so much again for replying im not on any meds i have been on steroids a few times but i dont want to take them anymore as i feel worse when i come off them i dont feel i go into remission at all as i feel the same at all times! i am in pain everyday and i was on tramadol but i also have colitis and was told that they cause constipation (im falling to bits) lol ty again and i will try speaking with a nurse and looking into the brompton ty again for your kindness and im so glad you are feeling well take care xx

[Hidden in reply to dilly20]

At present under Brompton as my local hosp diagnosed me with bronchiolitis and after two and half years they now think l have not. Steriods were useless but caused other problems. Thankfully off them, but time on them has thinned my bones.

Brompton are good, but expect many visits to them. I was told by my consultant l would go up, tests done know answer same day....Not the case, now heading into Sept, first appointment was July 3rd. Some departments have long waiting lists, plus in my case, the proff only does Monday mornings.

They will keep on until they get u an answer.

Not sure how ur getting there. But although they are good at appointment times, try and get more than one test in that day if needed. We always go for the first ones if possible as clinics open at nine. We go by car from Kent, leaving around six to avoid traffic into London . if u are disabled and have blue badge u can get special parking by the side of outpatients. However only five available. So u need to book.....check out their hospital site and read parking.

Don't be put off. I was not sure what to expect, really friendly, helpful hosp, outpatients and main hospital. I had to wait ten weeks for an appointment but it's with fingers crossed on the 21st Sept l will get my answer.

Go for it, u have nothing to lose, and everything to gain.

Pamillia

[dilly20]

hi ty so much for reply firstly i wish you much luck with your app in sep...... unfortunatly for me i live in merseyside so i wouldnt beable to get to london hospital really wish i could though they sound very good x

[Hidden in reply to dilly20]

oh no, have u a good hosp near u that u can attend. Check them out, speak to people maybe someone on here knows of one in ur area. Phone up the foundation and speak to one of their nurses they are really helpful. Not only do we fight whatever problems we have, but we seem to fight to get the right hospital to treat us.

in some ways I am lucky to be at Brompton, but not before two and half years being treated for something l did not have. so its my hope that what ever l have has not got worse because of it. We all put our lives in those we believe know their job . at the end of the day l just want a quality of life, so that those around me are not effect to much.

hope u get sorted soon. thinking of u.

pamillia

[dilly20 in reply to Hidden]

hi ty so much again i will ring up and speak with one of the nurses here and see how they can help lots of good health for the future take good care of yourself xxx

[freefaller in reply to dilly20]

Maybe you could try University Hospital of South Manchester? They are brilliant there I go there for Asperillosis/Aspergilloma, as they are the centre of excellence but have heard that they are good for other lung problems.

[dilly20 in reply to freefaller]

ty very much for kind reply i will talk to a nurse here and see what she says take care and good health and happiness to you for future xxx

[sassy59]

I am carer for hubby Pete who has had sarcoidosis for 24 years now. He is under the Brompton and is also seen at our local Hospital. Pete takes steroids every day (10mg) as he does not feel he can come off them. He has many other drugs too including anti biotics every other day. If you can get a referral dilly then you will probably do much better as the Brompton do have specialists there who can help you.

Good luck with everything and do insist on a referral. Take care xxxx

[dilly20]

hi sassy ty so much for your kind reply im so sorry to hear about your hubby he has had it a long time ....... i will be trying to get a referal but i dont live anywhere near london so it wont be brompton but i do want to see someone lse as i dont feel he listens at all to me thanking you and wishing you both good hralth and happiness take care xxxx

[MarieW-F in reply to dilly20]

It doesn't matter that you don't live anywhere near Brompton. You can still ask to be referred there - I think you also get help with travel costs. I have never been as my sarcoidosis did the damage over a long period of time but as soon as I started on meds it went into remission so whilst I have it, its not active. I am under a separate hospital that specialises in lung problems but if my sarc comes back and I am unhappy with the treatment I would ask to be referred to the Brompton and I live in Cumbria.

[dilly20 in reply to MarieW-F]

wow! thank you so much for that i will look into it hope your having a good day love dilly xxx

[Cooperhart]

I have asthma and I'm waiting on a sarcoidosis diagnosis and I totally agree the royal Brompton is the best hospital I've ever been in and certainly no what there doing u need to be referred, good luck xx

[dilly20]

ty so much cooperhart best wishes to you xx

[carlam131]

i was dx with sarc 3 years ago, after being told i had lung cancer!

turns out i have necrotizing sarc, which i understand is even rarer than sarcoidosis

i am in edinburgh, and my doc in edinburgh royal infirmary is very good and very knowledgeable. i am not normally on any medication for sarc, however, just recently a CT scan showed more lumps and bumps in my lung. doc has put me on to a month of prednisolin in the hope that the big lump wiill shrink

like most people i struggle with general aches and pains, but generally speaking i consider myself fortunate