sarcoidosis

Chest and lungs
1

I have been short of breath for 2 years. Have had raised lymph glands for 9 months and 2 episodes of red raised rash on legs. I saw heamatologist yesterday as GP thought I could have lymphoma, but he thinks its more likely sarc.  He has oredered CT scan with contrast. My lung CT scan and chest x rays where normal. I have been seeing chest specialist almost a year without diagnosis. Saw rheumatologist but all bloods where normal. I am aneamic and itch at night. Does this sound like sarc, and is it normal for it to take so long to get a diagnosis of sarc.

2

Hello Joan yes it can take a while. Mine took 18 months. Before getting a diagnosis I had very itchy skin red blotches and lumps on my legs. Numerous chest X Ray's and bloods. I was eventually rushed into hospital October last year where I had an op to remove a lymph node through my windpipe. My legs were three times the norm and very painful. I had also had a dry cough for two years. After all this I was given the diagnosis of Lufgrens Syndrome on my legs also erythema nordosum. And Sarcoids in my lungs. I was put on Steroids and so far they seem to be keeping it at bay. I had been treated for Asthma from when I was 43 and it now turns out it was sarcoidodis the whole time. Sorry I have gone a bit but you sounded so much like what I had gone through

3

Yes that sounds like Sarcoidosis u need byopsy of ur lymph nodes this will give you ur diagnosis

4

Hi Joan,

yes, mine took about 4 years to diagnose. That's because I had slightly different symptoms than most people with sarcoidosis. If there is no lung involvement, it could be a different kind of sarcoidosis...this condition can affect different parts of your body. You need to be patient as doctors are trying to diagnose your condition. They will, eventually. A good indicator of sarcoidosis is Angiotensin Converting Enzyme, or ACE. Elevated ACE levels in conjunction with other symptoms could clearly show if you suffer from this condition or not. Good luck and let us know how it goes...

5

Thank you, yes I will let you know the outcome x

6

Hi Joan

I was diagnosed 30 years ago and like everyone I had trouble getting diagnosed.

"My lung CT scan and chest x rays where normal."

Every thing else sounds like sarcoid, except your lung tests. Would it be worth it to get tests done by a different clinic?

Your ACE levels are a good indicator as suggest to you by another poster. Simple blood tests will help here.

Sadcoid usually effects other organs especially liver and spleen which are often enlarged. Can you request ultrasound tests to see if they are enlarged?

lung biopsy is usually the ultimate test but with clear lungs they may not agree to do this test.

'red raised rash on legs' this sounds like saroid.

Have you checked for asthma???

Hope there is some help in my words

Regards Tangles

7

My lung function tests where not normal, especially gas transfer levels. I have been told I dont have asthma. As far as i know my blood tests are normal apart from red blood count which is low and my kidney function. I was tender on the left side of abdomen when examined. I have to ring for date for ct scan with contrast tomorrow.

8

Is a runny nose and catarrh a sigh of sarc ? 

9

Hi Joan,

not necessarily. Though a running nose could also mean that sarcoid affected your sinuses. I also have problems with my sinuses, but it's quite difficult to tell if sarcoidosis has also affected my sinuses (a new ct scan will be necessary for that, but I just had one for my pulmonary/heart problems, so maybe next time...).

Sarcoidosis can affect everything in your body, from internal organs, including sinuses and eyes, to skin...so, any symptom could be related to sarcoid or could be a sign of another condition. Only doctors could tell after many, many tests...

Good luck!

10

Hi Joan

"My lung function tests where not normal"

That sounds like sarcoid. Especially poor gas transfer levels.

Blood tests only show the results that the doctor asked to be tested.

Ask for a test to check your ACE levels as these are a good indicator.

Also your platelette count as this may be low if you have an enlarged spleen.

Regards

Tangles

11

My blood tests have all been normal,including ACE. My FBC was low at108 and my kidney funtion is low. Hoping the ct scan will give me some answers

12

Yes, It takes forever.  It took them over 3 years to diagnosis me.  I had to switch Dr's  

13

I have been diagnosed with stage 1 sarcoidosis. No treatment needed. Got to stay active. Have been referred to a cardiologist to make sure its not angina.