Sarcoidosis diagnosis
Posted , 6 users are following.
Hi I have had a chesty cough and shortness of breath for a while now. After a chest xray showed enlarged lymph nodes, I was sent for a ct scan and I have just been diagnosed with Sarcoidosis. Could anybody shed any light on how serious this is or can be? My doctor wants to send me to a specialist to extract a biopsy from one of the lymph nodes but he's quite negative at times so I'm not sure how bad this can be if it's bad at all?
1 like, 47 replies
orcue70 Brahmabull16
Posted
Hey mate, I was going through the exact same thing as you are now this time last year.
I was diagNosed with pulmonary sarcoidosis. This was found through my biopsy in my throat through the enlarged nymph node.
I was treated with steroid nasal spray.
I went for lung function test n blood test every four months and saw my lung specialist each of these times where he analysed my results.
Just last week he saw my latest results and he said I didn't have to go back to him till another year. I took nearly a year out of work. I was having every symptom of sarcoidosis. But now I'm over it don't let it get you down.
Regards
Rory
Brahmabull16 orcue70
Posted
Hi Rory, sorry you had to go through that but I'm glad you are better now. How come you had to take a year off work was it that bad?
If I'm honest I'm not really that worried, I saw my chest x-ray results and the doctor said if it stays as it is I won't need any treatment and it will disappear on it's own. I'm a little nervous for today now but I'm so thirsty and I can't drink anything till I've had the biopsy lol.
shelby92952 orcue70
Posted
Sorry to hear this Rory. My partner is the same anday has been off work for 4months now he is a gas engineer and can't walk up 3 stairs never mind dig holes. The specialist has said under no circumstances will he ve returning to work any time soon. I feel positive when I seen comments like this as it makes me hopeful one day he will feel as good as new and be back doing his normal routine.
gail_24648 Brahmabull16
Posted
Brahmabull16 gail_24648
Posted
Hi Gail, Sorry for the late reply. Been mega busy at work. Yes they basically confirmed it was sarcoidosis, but it doesn't need treatment as it stands at the moment. All being well it should disappear within months or possibly years, theirs no way of telling how long. Gotta go back in a few month for a general check up, make sure things aren't getting worse but I have been discharged from the lung disease clinic which is a relief. How are you doing what did your results say?
gail_24648 Brahmabull16
Posted
Brahmabull16 gail_24648
Posted
Hi Gail, how are you hows things with your chest? Just wondering do you get more shortness of breath than you used to? I'm getting more shortness of breath more frequent and I'm coughing more often. I'm quite worried but my doctor is away till Friday so can't get to see him till then.
gail_24648 Brahmabull16
Posted
Brahmabull16 gail_24648
Posted
Hi Gail, sorry once again I never got an email through saying you had replied. How did it go at your consultants? Since I thought it was getting worse it's actually calmed down again. I went for a pulmonary function test a few weeks ago, i haven't got my results back yet but the nurse said everything went fine but their not aloud to say much more as you probably know. Hope your well Gail
The_Chief Brahmabull16
Posted
Hello Brahmabull16, Back in 1986 I was diagnosed with Sacoidosis at 21 mainly in my lungs after all the testing of many other nasties they thought were there (as Sarcoidosis was an unknown back then especially here in Australia) they insisted on biopsy just to be certain what they were dealing with but to also clean a passage for oxygen to get to my lungs for these Lymph nodes were cutting or restricting my airways down and was bead ridding for a good 3 month having no energy, losing appetite I had lost 25kg in 6 months, they were concerned until they got a definate diagnosis and put me on a heavy doses of cortisone and steriod treatments to help me breath by reducing these Lymph nodes, they removed 3 large one's which help a little but possibly saved me from the mental & physical torture a little bit, after 6 years of treatment it had subsided but I do get skin blisters, have permanant congestion, burning sensitive dry eyes, I'm always sweating especially with night sweats but still have regular x-ray and bloods tested every year and I see the Doctor regularly but just keeping positive gets me through the hard days. All the best to you with the treatments they are so much better these days.
Brahmabull16 The_Chief
Posted
Hi Chief, so sorry to hear what you've gone through. I hope your getting on well. I think im lucky at the moment as I'm still able to work (self employed gardener) I have a very physical job. From what my consultant was saying I've had it for around 5 years before getting symptoms, I'm hoping if it doesn't get better, then this is the worse it gets as it's certainly very manageable at the moment. I have bad days sometimes with major shortness of breath but then the next day 9 times out of 10 in fine. Hope your getting on ok.