Hi advice please. Due to see lung spe... - Lung Conditions C...
Hi advice please. Due to see lung specialist as xray showed inflamed lymph nodes dr said it might be sarcoid. What can I expect from appt
Where are your inflamed lymph nodes, and, what is sarcoid? I've got inflamed lymph nodes in my neck, they told me they are not malignant, and I have been wandering what it could be.
My lymph nodes on my lungs,they showed up on a chest xray which I had due to a persistent cough that ive had for over 2 months also been feeling not quite right for a while. Sarcoid I think is another name for sarcoidosis iam not entirely sure what it is . I see the lung specialist tomorrow so may get more info then!
You might have blood tests to see if your ACE levels show sarcoid. Have you had a bronchoscopy? They may offer you that or even consider a biopsy (I couldnt' have that that as lungs were too far gone). If it is sarcoid then I expect they will offer you medication - with me it was a high dose of steroids, and immuosuppressants with other things to counter act the steroids. The steroids did the trick for me and I am in remission (I hate that word). They may also test your lung function to see how much might have been lost due to the scarring. Please don't be too frightened.
I try and be as positive as I can about it - I know others don't. sila.org is a great website for 'sarkies', the only one devoted to the disease.
Good luck
Marie
Thankyou for taking the time to reply to me Marie. Will they do another xray to see if my lymph nodes have gone down or will they just look at my other xray iam a bit in the dark really and think that because my cough has died down during the day that all is fine but then at night it comes back and my breathing sounds all crackley when I lie on my side! Just not sure what to expect tomorrow and wether I just have talk to lung specialist or have tests done!
I had an xray and then went for a CT scan and bronchoscopy. It will I suppose depend on the consutlant what they might want to do with you next, if anything. The thing I have found with sarc is that no two people seem to have it the same. it affects people so many different ways. Some are, and feel very debilitated and others like me just see it as somethign I have to live with and get on with - as I said though they think i am in remission. My cough has completely disappeared - it was a terrible thing. Have you had any medication?
Also you said its an autoimune disease werr your body starts fighting against itself does it stop fighting against itself without steroids or does it need them to help it, once treated is it then gone? Sorry for all the questions!!
A lot of people have sarc and don't know, for many people it goes away of its own accord. For the unucky ones like me it needs help - steroids are the main thing that are used and sometimes an immunosuppressant. I am no longer on steroids but I am on the immunosuppressants still. Also if the treatment works, theres nothing to say it will come back, but nothing to say it won't either. For some people they need one treatment and thats it for others it seems to be a lifelong struggle. I certainly dont' mean to frighten you because theres a very good chance you will be fine. They might want to check your lung function too. Good luck. Let me know how you get on. There aren't many of us about!
Marie
x
Thankyou for all the info,the only thing I had was some antibiotics about 2 months ago as dr thought I had a chest infection then I had a throat infection then dr said I was fine even though still coughing said it was a virus finally a few weeks ago after constant nagging from my hubby I went and saw a different dr who sent me for a chest xray which was when it picked up the lymph nodes on my lungs. So she then said I need to see a lung specialist so off I go tomorrow!! Its nice to chat to someone about it and I will let you know how I get on. Thanks . Suzie x
Thats how I started (well apart from a 2 year cough, nigh sweats and weightloss). Went to GP, gave me antibiotics for chest infection, gave me some more then sent me for a chest xray. I had a particualrly bad chest infection (and had a lot of steroids too) and it was only my 5th course of antibiotics that cleared it up. But obviously somethign wrong and referred me to consultant and then thats when the bronchoscopy, ct scans etc started. Took 2.,5 months for final diagnosis as they had to rule out TB!!
Yes please let me know how you go.
marie x
Well when I think about things I have woken up coughing in my sleep to the point where I think iam choking for ages but put it down to sleeping too deeply and have had night sweats but put that down to getting older!! So maybe I ve had it for a while but thought it was other things. I also have lost 2 stone in weight iam a little concerned about the lump on my arm my dr said didnt know what it was so wonder if its all conected!! Suzie x
All you say sounds painfully familiar. I hope however you haven't got it. As for the lump. I am not sure - i had small raised patches of angry skin on my back and face - but wouldn't say they were lumps but as I said sarc can manifest itself in many many ways and affect different parts of the body (I had terribly sore eyes, constant what I thought was conjuctivitis - but a few months on the steroids and that cleared right up and consutlant thought it was because the sarc had affected my eyes too).
It could be connected or it might not be but certainly raise it tomorrow.
marie x
Bilateral hilar lymphadenopathy (swollen lymph nodes both sides hilar region of lung) with joint pain (arthralgia) is called Löfgren syndrome if the consultant mentions this it has better outcomes sooner than sarcoidosis.
Most cases will only need observation when after the first lot of tests nothing will happen for months as the consultants decide what is happening this is normal.
hi there, i was diagnosed with necrotizing sarcoidosis about 2 years ago. fortunately i dont need treatment, and i have a really good consultant who is keeping an eye on things
i also have sarc in my liver, but again no great problems from that
my main issues have been generalised joint pains, night sweats and general fatigue and malaise
this is a fantastic web site for us sarkies! suggest you have a look, and there are many people on that site who have tons and tons of knowledge, and are happy to answer a lot of questions
have a look and see what you think
inspire.com/groups/stop-sar...
love
carlam
xx
Thankyou so much. Its so good to chat about it all not that I know yet what the problem is dr just said they think it may be sarcoid but to see the lung specialist and take it from there!! Appt tomorrow at hospital. Suzie x
Quote from Clinical Pulmonary Medicine;
Necrotizing sarcoid granulomatosis is a rare disorder, whose etiology and pathogenesis are a topic of great debate. Diagnosis is often mistaken for “typical” sarcoid, hypersensitivity pneumonitis, lymphoid granulomatosis, or Wegener granulomatosis. The disease occurs in the late forties and predominately in women. Extrapulmonary involvement is rare. Symptoms may be absent or mimic malignancy. Radiographs are nonspecific; half reveal diffuse bilateral nodular disease. Biopsy is needed for diagnosis. There is no standard treatment. Recommendations include steroids, observation, and surgical resection for localized disease. All therapies have shown benefit. Reoccurrence can occur.
A really good consultant can write a research paper on such a rare and complex case furthering knowledge of NSG ensures specialist interest in a patients medical history.
Well todays the day iam off to see the lung specialist. I didnt think I was worried but I think my sub conscious is thinking otherwise as it didnt let me sleep last night!! I keep thinking iam just going to walk in they will say your xray is fine and then walk out again!!!
Well saw lung specialist today she went through all my symptoms she said its sounding like sarcoid but need ct scan to see how many lymph nodes are inflamed . They took bloods today, she said I may need to have a biopsy done which may have to be done in London as hospital in swindon is only just starting to do the procedure!! Dont fancy London for the day x
I must admit I was surprised the consultant said that they are just going to be starting in April with that procedure so she was going to find out if its under way yet fingers crossed it is as dont want to have to go to London when iam worried about a procedure anyway! Not good with london!!
Do they sedate you when doing a bronchoscopy?
They give you a light sedatative for a bronchoscopy - the nurse called it jungle juice. You will sort of be aware but unaware if you get my drift.
I woudl imagine for a biopsy its a full general anaesthetic,
Iam hoping I may not need it, but if it helps sort it then bring it on!! I just want to get on with it all now!! X
Nothing to it mild sedative it is only needle point biopsy and you can watch on screen for the interesting features in the lung that have already shown on a CT scan.
Any hospital with a respiratory department can carry out this common test in and out under four hours including recovery time.
Slight sore throat afterwards that was fine by the following day both times I have enjoyed the guided tour of my major airways.
Woken up this morning really tired and my neck has raised red skin that feels itchy looks worse than it is but could this be one of the things that sarcoidosis causes?
Systemic inflammation en.wikipedia.org/wiki/Eryth... worth considering
Well that was quick! Hospital phoned to say they have booked me a CT scan for monday morning!
My consultant was kind enough to show me the results of my scan I felt they gave me an accurate picture of where the damage was. It was a stage worse than had showed on the lung function test so hope for the best and prepare for the worst, whatever is found is covered with that strategy.
If my cough is dying down during the day does it mean it might going away or will the CT scan still show inflammed lymph nodes! My consultant didnt show me the xray and I forgot to ask her. Iam still coughing at night and breathing all crackling!! The consultant was very keen to get my CT scan forward.
What do you mean by a stage worse!? What do they do for a lung function test?
I agree - its useful to see the CT Scan. I coudl see the scarring and was carefully explained to me what i was havign the issues I was. Definitely do what Ian says, re preapring.
Oooo crikey hospital phoned to say swindon are starting bronchoscopy procedures tomorrow and thought I would be a good case to start with!!! Bit scared now. Had CT scan this morning but obviously no results yet x
I just want to say what a lovely site this is. Everyone is really helpful and gives good advice. Well feeling a little apprehensive about my bronchoscopy today but iam sure I will be in good hands!!!
Well thats bronchoscopy done and biopsy taken and it was a horrible procedure!! Also consultant said th CT scan is looking like it is sarcoidosis xxx
Well guess I now have to wait for bronchoscopy and biopsy results before they give me a definite diagnosis. Have a very gravely voice due to the bronchoscopy!!! Iam hoping that I wont need steroids and that it is as the consultant said burning itself out!! Hope I dont have to wait long for follow up appt!!
All been a bit quiet since I had my bronchoscopy. Back to work after the easter break. Voice just getting back to normal but as iam a nursery teacher its been challenging reading stories and singing!!! Dont seem to have heard from the hospital about wether I definitely have sarcoid although I have a lung function test on the 8th may but I thought I might have heard about the biopsy they did. Really tired but cough has subsided slightly but chest uncomfortable I just want a diagnosis for definite and to know if I need treatment or not. X
There is a lot of waiting around at the early stage, my consultant described it as knowing which way the tide was travelling - coming in or going out. Usually no news is good news because if they find anything life threatening the response must be immediate.
With any luck you will get through this term and have more information on a systemic condition.
Finall got results yesterday have been confirmed that I have sarcoidosis!! Biopsy confirmation and ct scan has shown that it has gone into my lung tissue. Been put on steroids not sure what to expect really felt a bit down yesterday
Keep the doctors in the loop with how your feeling its not unusual for side effects in the first couple of months.
Hi ....I know this is an old post but was wondering how you are today? ....I've just had a Bronchoscopy biopsy and awaiting g the results. My consultant said possible sarcoidosis
Ebony xx
I had been coughing almost constantly and getting short of breath, my X-rays showed damage to the lymph nodes and shadows on the lungs. I had a biopsy which confirmed sarcoidosis. I've now had it for four and a half years, I don't take as many steroids, but do need them when I get a flare up, which is roughly every 6-8weeks. The shadows have reduced but not gone and I've been told that the lymph nodes will remain damaged.
I now live in Germany, not had to see a doctor yet (tempt fate), but it will be interesting to hear what their opinions are. Will let you know when I see one!
