It's a shame that between us we couldn't sort it out ourselves, and inform the doctors!

Keep in touch and take care.  Col. 

Haha, isn't it!! 
 

Thanks Colin - same to you! 
 

Rachael

Colin and Rachael,

It's been a month, and I'm just wondering whether either of you have progressed with your diagnosis?

I've had my mediastinoscopy, but it will be 10 or so days before I get my results.

Roger

Hi Roger, how did the mediastinoscopy itself go? 
 

I had a call from another consultant from the Thoracic Team on Wednesday who advised that they believe it is Sarcoidosis affecting my lungs, skin and eyes. He's started me on steroids and I need to go for another CT scan later today. He may also prescribe an immunosuppressant medication, it sounds like there's going to be a lot of ongoing monitoring to see which way this is going to go. He said that in some people it will disappear after a few years and in others it will be lifelong and come with a host of other complications; however I know someone who had it years ago, it disappeared and has been back for 5 years now. This last few weeks have been awful in terms of chest pain, exhaustion and a fun new symptom to accompany the others - burning, itchy eyes and skin around my eyes up to my hairline, it's been so sore and painful! Hoping the steroids kick in and ease symptoms/give me back some energy as soon as possible! In the meantime he's signed me off work for a short while to allow the meds to kick in and me to sort myself out. He also advised me to stay away from the American websites about sarcoidosis because they will "make you want to slit your wrists". 
 

Hope you both get the answers and treatment you need ASAP!! I've joined a SarcoidosisUK Facebook group which I think is going to be a helpful resource in terms of sharing experiences and acccessing support/information going forward, if either of you use Fbook it may be worth looking at!

Good to hear from you.    I saw my consultant last Friday, he had suggested taking a lymph node out of my neck for better analysis, but the swelling seems to have gone down, so he is happy to leave it.  He's sure there's no cancer in my chest or around my tongue, where it originally was which is great news.      As for the tiredness he says its very common for patients who have had cancer, regardless of its location or severity,  to feel unwell after 3 or 4 months , even though they've been feeling ok.      I'm wondering if anyone else has come across this. 

He still hasn't ruled out lymphoma or sarcoidosis, so I've an appointment  at haematology next month for more tests.

Hope this finds you otherwise well.   Take care and keep in touch.    Colin.

Thanks for the update, Colin, and at least your neck lymph node is swelling less. Good luck, and do let us know what happens at haematology. I would be particularly interested to know what tests they do.

Roger.

Hi, has anyone been diagnosed with sarcoidosis? I was being investigated for sarcoidosis versus lymphoma. Eventually I was diagnosed with neurosarcoidosis a week ago after a 7 week hospital stay. I had initially presented with blurred vision in both eyes and idiopathic intracranial hypertension was ruled out after my lumbar puncture csf pressure was normal. A CT chest, abdomen and pelvis showed a large amount of enlarged lymph nodes in my chest. I elected to undergo surgery to remove my spinal cord stimulator so I could have an MRI scan. My symptoms were sternum pain, breathlessness, severe fatigue, pain in my left lung, 2 stone weight loss over 4 months. I had a PET scan which my consultant said "lit up like a Christmas tree". I had an EUS biopsy of the lymph nodes which suggested sarcoidosis. I developed complete numbness across my sternum and on the left side of my chest, abdomen and back from T3 to T12 and a tremor in my hands and severe tremor when standing or walking and my balance was affected. My CT chest showed up non caseating granulomas in my left lung which has caused pulmonary fibrosis. I was treated with 3 days of iv methylprednisolone 1000mg daily. I still have severe pain in my sternum which feels like something is stuck in my oesophagus and is so uncomfortable. Nothing seems to ease it but my consultant said it is probably the lymph nodes pressing up against it. I have lots of follow up appointments and I have to have another lumbar puncture in 6 weeks. Any information would be welcome as there is so little information or support available.