SARCOIDOSIS OF THE LUNG please Quix or anyone

[grannyhotwheels]

This is not a question for me but rather for my husband. His doctor told us that although she still isn't ruling out some form or cancer she is leaning heavily towards Sarcoidosis of the Lung for his diagnosis. I have googled this but I guess my inability to understand things very well is running in over drive I'm not understanding exactly what this is or how bad it is.

Quix or anyone else who might know something about this, I would appreciate it so much if you could explain it to me in something like Oklahoma English. I know that's asking a lot but just try please.

Thank you in advance for any information that anyone may be able to give me on this.

I'll be praying,
Carol

[Quixotic1]

Waht JJ and Tonya said.  I have little else to offer, except there is a theory held by a non-physician, Dr. Trevor Marshall, that Sarcoidosis is caused by an infection by an organism called Mycoplasma.  He has touted a cure for it - without scientific study evidence called the Marshall Protocol.

I bring this up because he has some avid followers here on MedHelp and someone will always chime in about it.  I have no opinion on it except that instead of studying it he went directly to the internet and encouraged people to find a doctor to prescribe his protocol.  There are claims on his supporter's sites that the Marshall Protocol will cure everything from Sarcoidosis to all autoimmune diseases to Alzheimers and includes MS and cancer.  I think that speaks for itself.

The disease forms lumps of immune cells and repair cells and scarring cells.  In the majority of caucasions it will limit itself, but it can, on occasion be chronic and very disabling.  It is more severe in blacks.

The main accepted therapy is steroids.  No cure is known to evidence-based medicine.  Many people have it without symptoms and it is discovered by accident when they take an xray.  The Xray will show nodules in the lung and often swollen lymph nodes in the center of the lungs and between the lungs.

Other common symptoms are fever, dry cough, weight loss, swollen lymph nodes in others places, rashes and lumps on the skin.  Though it is most common in the lungs it can occur in almost any other part of the body or organ.

When sarcoidosis appears in the brain (neurosarcoidosis) it can be a perfect mimic of MS.

More questions?

Quix

[tonyad]

   I too was told that I had cancer several years ago which turned out to
be Sarcoidosis. NOT cancer!  What kind of testing have they done? what kind of blood work?  A good blood test to have checked if one is thinking Sarcoid is n ACE and SED rate.

   Any biopsies scheduled?  I know the feeling oh to well........being told you have cancer when no other testing or biopsies have been done. Shame on the medical communities for scaring pt's like that!  
   What do you have lined up next? What are your next steps, tests?

~Tonya

[lovemy6monkeys]

Carol,

I can't help with info, but I'd like to offer you and your husband both ((hugs))

~Jess

[supermum_ms]

What Is It?
Sarcoidosis is an illness that causes tiny islands of inflammatory cells to form throughout the body. These microscopic groups of cells are called granulomas. They are especially common in the lungs, lymph nodes, skin, eyes and liver. The cause of sarcoidosis is unknown.

Sometimes, these granulomas cause very little damage, so a person with sarcoidosis does not have any symptoms of illness. In other cases, however, the granulomas produce large areas of inflammation and scarring that can interfere with an organ's normal functions. Although most people with sarcoidosis eventually recover, a few develop forms of the illness that are long-lasting (chronic) and get worse with time.

Sarcoidosis can affect almost any body organ, but the most common target is the lung.

Although doctors do not know the exact cause of sarcoidosis, there is strong evidence that the illness involves an abnormal immune reaction. For example, it is known that the granulomas contain cells from the immune system, particularly a type called helper-inducer T cells. Some experts believe that the abnormal immune reaction of sarcoidosis may be triggered by an infection. Others suspect that the illness may follow exposure to an allergen (allergy-producing agent) in the environment.

In addition, genetic (inherited) factors probably play some role in increasing a person's risk of developing the illness.

In the United States, sarcoidosis affects about 10 of every 100,000 white people and about 36 of every 100,000 African-Americans. Other groups with a higher risk of developing sarcoidosis are Scandinavians, Irish, British and Japanese. In general, women are affected more often than men, and about 75% of all those affected are younger than age 40.

Prognosis
Many people with sarcoidosis have no significant disease activity and require no therapy. For these people, the outlook is excellent. Only a small percentage of people develop permanent or progressive organ damage. Death related to sarcoidosis is rare.

Hope this gives you some information, if you want any thing else just let me know

Cheers.........JJ