Sarcoidosis Support User Group
Need your advice please
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Welcome to the sarcoidosis support group, a place where sarcoid sufferers can go to discuss symptoms, diagnosis and treatment in any stage of the disease.

Founded by mygoode on October 4, 2010
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Need your advice please

Hi,

Over ten years ago I was diagnosed with sarcoidosis on the lungs. It was found with a chest x ray.
Apart from being breathless I had no particular symptoms so I didnt have any treatment. About two years ago the gp told me it was gone. There was still some scarring but it was gone.
This year after a routine inspection the gp found nodes on my neck. I had a fine needle biopsy and it came out it was granulomas but they dont know which one. So I had two enlarged lymph nodes removed and they left the other three. I will have the results soon. I had also another chest ray saying the sarcoidosis was still in my lungs( did it come back or never left?) but my lungs were less swollen than in the previous scan. I am always tired, breathless and my knees hurt often. I also suffer from lower back pain but dont know if is related.
The advice I need is how do they know if it is a progressive sarcoidosis and if it is spread elsewhere? Will. I need more tests?
Thanks
3 Comments
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570898_tn?1286205761
From what I understand, the damage caused by granulomas in the lungs leaves permanent damage and scar tissue even if the granulomas themselves subside.  Unfortunately, you can go into remission from sarc but it never truly goes away.  You may be experiencing a single flare that can go away as quickly as it came.  The disease may also be progressing.  The bad aspect to sarc is that you never can tell what it's going to do.  My doc prefers CTs because the X-Ray's are so hard to really distinguish between scar tissue and new granulomas, so I'd ask for one so they get a better view.  The shortness of breath can be a common symptom but I'd have your pulmonologist run the lung function test again just to see what's up.  He may also do an oxygen saturation test.  You can also have your vitamin D and Calcium levels checked.  When my fatigue was at the extreme, it was due to my severely low Vitamin D levels and a D scrip solved the problem.  You need to be careful with that though as sometimes it has more to do with the fact that your body shuts down D production due to the inability to absorb Calcium.  If Calcium is normal and D is low, a scrip for Vit D and OTC vitamins after that should help.  You can research Vitamin D and Sarc to find tons of information but much of it is speculation at this point.  Fatigue in general is also a symptom of sarc though, as is joint pain.  Sarc can act much like Rheumatoid Arthritis and cause periodic joint swelling.  The good news is, it can subside and not bother you for long periods of time.  I'll have days when my ankles, knees and hips are in so inflamed I can't walk for the pain and two days later, I'm pain free and feeling like I could run a marathon.  This disease is very odd.

My suggestion would be a CT to get more info on the lungs, a Calcium and Vitamin D test as well as a CRP check.  ACE levels aren't always a great way to check for the effects of Sarc (mine are always normal) but your C Reactive Protein will be high if Sarc is flaring as they rise in response to inflamation (inflammation).  I'd also suggest making sure your doctor has dealt with Sarc patients before.  You'd be surprised how clueless some of them are.  That said, your life can be made much easier with a doc or two that know about this disease.
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Avatar_f_tn
Thanks for your reply. I suppose I will know more soon. Since my operation I had four other swollen lymph nodes all around the scar. Dont know if it is normal as a defense mechanism or more lumps coming.
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570898_tn?1286205761
It may be the sarc. All the nodes in my chest were inflamed. They didn't remove anything though.
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