sarcoidosis and lymphoma cancer query.

So did you also have lymphoma in your spleen? If so, what were yyour symptoms and how were you diagnosed?

No I did not have Lymphoma it was sarcoidosis, they treat it like cancer.

Thanks for all your help. I'm having a lot of issues with my spleen, lymphs and joints. My Dr's don't want to run anymore test, so I'm going to a oncologist on my own . I just want to be sure that is not something else besides Sarcoidosis.

Hi DaShaun0976,

I am going through the same thing. My doctor told me that I have enlarged lymph nodes in my hill. Don't know if cancer or sarcodosis. My mother suffers from sarcoid. Dr scan in 4 days however whay was some of your symptoms?

I had a sore and enlarged lymph years ago. The biopsy said fro chronic inflammation. Sence then I have had flat ups of multiple lymphs, but lately they have been extremely sore along with pain in my spleen. I am you g to see another Dr at the end of this month for another opinion.

Thank you DaShaun for the reply. I am scared and it seems takimg to suffers helps me.The chest xray shown enlarged lymph nodes in my upper hilar which is the lung. I get coughing and sometimes shortness of breath, however I have this wheeze exhaling when Iay down. where your lymph nodes enlarged at the lungs? what were some of your symptoms?

No I didn’t have lymphoma, it was sarcoid. Symptoms: spleen was enlarged and actually leaking requiring blood transfusion, extreme fatigue, renal failure (everything smelled like urine) nausea, calcium count of 12.7, severe aching pain in my legs and feet, nothing would help but a bath of very hot water.

I have the spleen issue and my legs ache really bad sometimes and then it goes away. I haven't had my calcium checked yet. Thanks for the information. I hope that you're feeling ok.

It’s been going on for 7 years now, I have ACE, CRP, & Calcium checked monthly. 

Hi I know this wasn't for me, but I have Sarcoid in lungs and lymph glands...lung symptoms

Dry cough

Wheezing at night especially when I lay down and if I have swam that day

Chest pain (10years of it now)

Sometimes when I'm out walking etc I feel like I need to stop just for a second to take a super deep breath...not like im breathless but I just need a top up.

Don't do to much googling it will drive you mad...speak to trained health professionals it's what they are paid for.

Take care

Paul

Anything else you want to know I'm happy to share. I've never taken this desease to seriously, I was sure I had lung cancer before my diagnosis so I was happy with an auto immune desease

Paul

Hi Paul36323,

Thank you for the reply. Did they put you on medication? has it ever went away and reapper within the 10 years? I get worried about it going to other organs. I am currently not on any medication but my knees and ankles do ache.

No I have never been put on anything. I tried an inhaler for the wheezing but it didn't work.

Don't worry about it moving to other organs, there is no way of telling what it will do and beating yourself up with worry is no good as with all auto immune deaseses, stress makes it worse. Easier said than done but most the time it buggers off by itself and doesn't get any worse. Or if your doctor feels it is needed they will put you on medication. Joing pain seems to be common but it's no the worst thing in the world. We all end up with achy joints anyway. No mine has not got any better. X-rays still look horrific but honestly I'm fine with that, it's being monitored. I see my consultant every six months. Have x-rays bloods lung function tests and an echocardiogram....all remains normal

Paul

I am surprised after all this time they have not placed you on prednisone. My GP mentioned that the specialist will properly take a watch and wait approach and monitor as your case. It is just really scary, however better than cancer. Thank you for all your help Paul.

They have me on Obreo for the wheezing and dry cough.