I wanted to ask if anyone has sarcoidosis( not sure the spelling is right) as my doctors are thinking I may have it either that or possible cancer as I did have thyroid canceer.
I have noduals on my liver, which I also have high enzymes. The liver and spleen are also swelling. Then they found the in my lungs also and they believe its in my brain as well. They are really cocerned about it until they can figure exactly what all this is. Does anyone know what it could be?
Thank you

Samantha

The spelling is correct.

A former friend's mother passed away from the disease after a prolonged battle (she had a severe case). The daughter was the most perceptive person I had ever been around regarding her ability to read my pain, due to her experience with growing up around her mother's pain.

Fatigue is a major factor. The damage done to internal organs can be severe for a small percentage of patients, while others have no long term effects and go into remission after a few years. There is no known cure, but anything you can do to increase your body's natural immunity will give you the best chance to fight the disease.

Do you have a family history of the disorder? (there is a genetic link.) I do know that it is most common in African American women and they tend to suffer from the most severe forms of the disease.

This is also the disease that Bernie Mac and Reggie White both died from. I know some have questioned whether race has been a factor in the research being underfunded...

Dear Samantha -

I was diagnosed with pulmonary sarcoidosis in 2005, 4 years into this. It first appeared as an "ground glass formation" on a CT of my lungs that was ordered after I had an unexplained seizure in my chest, later determined to have been a mild heart attack. The pulmonologist "watched" this with quarterly CT scans and by the third quarter it was moving. It was finally diagnosed with a biopsy taken through a fluoroscopy assisted bronchoscopy.

For the record: the doctor I had been seeing in LA insisted they needed to go in through an incision in my chest, where they couldn't get enough tissue with a bronchoscopy. I really didn't want to do that where I already had RSD/CRPS. So I called a friend I've known since junior high who's a pulmonologist on the staff of the Mayo Clinic in Rochester MN. Not only did they do fluoroscopy assisted bronchoscopies all the time, but the procedure was developed there well over 30 years ago! But then I found out why they don't like to do them in LA: after the procedure I was given instructions that if I spit up "More than a pint of blood" in the next 24 hours, I was to go to the ER. (Basically, it works well enough with tough old Norwegian farmers, but doesn't translate real well among city folks.) As it was, I had no complications at all.

So to answer what one of your questions may be, the gold standard of a sarcoidosis diagnosis is tissue biopsy, at whatever spot the biopsy would be least invasive.

When I got back to LA I was followed by an international specialist in the field, who just happened to be at USC. Apparently, sarcoidosis is as racist and sexist as they come. In males of Northern European ancestry, it almost always goes into spontaneous remission and after 5 years in remission it's never been known to come back, so if you make it to that mark, as I did, you are cured and discharged. On the other hand, in females of African origin, it can have severe consequences, despite years of aggressive therapy, primarily with steroids. Most other demographic groups fall somewhere in-between.

As an aside, the first thing the sarcoidosis specialist did for me was to get base-line breathing measurements, and then arranged for cardiac studies to see if it had spread there: that's when they realized I had had a previously undiagnosed MI the year before, at which point I was stented. (No one had considered the possibility earlier because I had an absolutely clean nuclear medicine stress test of my heart of few months before "the event," which was later deemed to have been a false-negative: me and the late Tim Russert.) http://www.webmd.com/heart-disease/n...answers?page=3 [Free registration may be required.]

And I should make clear that at no time was I ever symptomatic with sarcoidosis.

According to when I last saw my doctor perhaps eight months ago (for whom a search of his name and "sarcoidosis" in PubMed yields 198 peer-reviewed articles to-date) there were at that time no statistically significant correlates between sarcoidosis and any other recognized disease condition and its cause remains unknown, other than the fact that there are inflammatory mechanisms apparently in place, witness a higher level of plasma TNF-α concentrations in patients than controls at all times. See, e.g., Fatigue and plasma cytokine concentrations at rest and during exercise in patients with sarcoidosis, Baydur A, Alavy B, Nawathe A, et al, Clin Respir J. 2011 Jul; 5(3):156-64. Epub 2010 Jun 30:

Abstract
BACKGROUND: Patients with sarcoidosis exhibit exercise intolerance-related fatigue and increased levels of circulating proinflammatory cytokines at rest. Exercise may result in increased plasma cytokine levels (PCLs) in healthy adults, but such a relationship has not been studied in sarcoidosis patients.

OBJECTIVES: To assess relationship of fatigue in sarcoidosis with PCLs at rest and with cardiopulmonary exercise testing (CPET).

METHODS: We assessed lung function, CPET data, multidimensional fatigue inventory, plasma tumor necrosis factor-α (TNF-α) and interleukin-1β (IL-1β) concentrations before, immediately after, and 4-6 h following CPET in 22 sarcoidosis patients (13 receiving immunomodulatory drugs) and 22 controls.

RESULTS: Patients exhibited greater fatigue, reduced cardiorespiratory function, higher Medical Research Council (MRC) scores and higher plasma TNF-α concentrations than controls at all times. Plasma IL-1β levels did not differ between cohorts. Patients exhibited a 28% increase (statistically not significant) in TNF-α level immediately post exercise. Plasma IL-β concentrations did not change among cohorts. Treated patients exhibited higher MRC and physical fatigue scores and lower breathing reserve, but no differences in cardiorespiratory function or PCLs compared to untreated patients. In treated patients, pre-exercise plasma IL-1β correlated with physical fatigue, reduced motivation and total fatigue; TNF-α levels only correlated with general fatigue score.

CONCLUSION: Treated sarcoidosis patients exhibit a relation between physical fatigue, reduced motivation and total fatigue and pre-exercise plasma IL-1β concentrations. Acute exercise does not increase PCLs. Whether the reduced MRC score and physical fatigue in treated patients is related to the therapy or to the underlying inflammatory process is difficult to determine.

© 2010 Blackwell Publishing Ltd.

PMID: 21679351 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/21679351

I hope this is helpful. Good luck.

Mike