How to approach G.P.?

Hi all, i'm new here, hope it's ok to ask a couple of questions? I haven't got a diagnosis yet, but wondered if people could share how they were diagnosed, e.g. presenting symptoms? How long did it take to get a diagnosis? Thank you..

[derekjgibbs]

When I was 64 and still with a very active lifestyle I began to get out of breath quickly while playing squash. I went to the doctor for a skin infection and just mentioned this problem so she suggested I have a routine chest x-ray. She said it might take a few weeks to report back. However, the next day I got a call telling me to see the doctor today! She was confident it wasn't lung cancer but my lung x-ray was 'misty'.

I began a long series of tests. The first were taking samples from my lungs when they discovered I had a pneumonia infection. That was treated but the mistyness remained. Next was a CT scan and the consultant was fairly certain it was indicating sarcoidosis. It does seem difficult to get a definitive diagnosis. Eventually they said I would need a Video-assisted thoracoscopic surgery (VATS). This where they poke around your lungs with a camera. Their main concern was eliminating cancer.

This was sucessful but because I only had mild symptoms I had no treatment just monitoring. It took 6 months to get over the operation and then the sarcoid just disappeared as it often does.

I'm still playing badminton, squash and golf at 67 but do think my lung capacity has been lowered but so far all is ok. I guess the whole thing lasted 3 years.

[hypermobilecat]

I have had chest pains for long time, years ago had acute coronary syndrome, several years back had endoscopy for swallowing difficulty, breathing problems, chestpain and upper abdominal pain had endoscopy they found a hernia,but this year had ct cardiac scan which found findings consistent with sarc. had more scans done over 8 month period. have not had definate dx though because dnt want the camera or biopsy. think the ct scan is good to give a good idea if you have it.

[Marie-Helene]

Hi. I am 59 years And was diagnosed last April after a biopsy of a growth on my wrist. First I had a little lump the size of an olive which I ignored for a good two years and then it started to grow significantly. First The MR I suggested aggressive lymphoma with multi nucleus cells and giant cells. The biopsy proved it was not cancer, but a granumalatous inflammation. But it took many more test and it was a process of elimination which came to the conclusion of the definite diagnose of chronic sarcoidosis. However I have been suffering from breathing problems for twenty years and was treated as an asthmatic. My caughing was getting very severe in the past two years and an x Ray did not reveal anything a year ago. Before my wrist tumor. I have been suffering from unexplained fatigue for years when I woul lack total energy for hours ( not my type to lie down for hours as I have always been a very active person). I have had sharp pains in my lungs for years which I just thought were intercostal pains ( not to worry about). 11 years ago I was taken to A and E as I had all the symptoms of a heart attack.but blood samples ruled it out. Symptoms were severe, but inconclusive diagnose.

All make sense now. After C T scan , my lungs are scarred , my lymph nodes were tAken with my wrist growth, my skin on my face being photosensitive to the sunlight with redness on nose and cheeks ( known as the butterfly) proved I have lupus Pernio. My strongest unexplained symptoms were constant fatigue (misdiagnosed as a show of depression and aging) , constant cough and breathlessness ( diagnosed as Asthma for years. I have been referred to the Royal Free in Hampstead in London where there is a specialist team for sarcoidosis. Releived I am being treated by experts for this rare disease. Totally releived I have not got cancer. Hope this helps. Good luck.