One of the hardest things to deal with is being sick and not knowing why. Some time ago I developed a cough that would not go away. It would come and go three or four times a year. I would also feel fatigued.
I also suffered from dizziness. Lost a little weight. I knew something was wrong but my doctor could not find anything wrong. They all said you look great. I was a competitive bodybuilder and power lifter. I had won over 200 awards. I took ever test they suggested. I even went to a psychologist. Nothing there either. Got an ear exam that found a hole in my eardrum. The hole was repaired and the dizziness went away. I still had the cough, weight loss and the fatigue. One doctor suggested I have my bone marrow tested. I said why not. The hematologist started to go into my hip to get the bone marrow. The needle got stuck. He couldn’t get it out nor go any further into my hip to get the bone marrow. With concern on his face he said don’t move. Where was I going to go with a 12-inch needle sticking out of my hip? When the doctor finally got back he had a pair of pliers. I hope he didn’t get them out of his car. He finally got the needle out of my hip. We still had to get the bone marrow. He suggested getting it out of the bones in my chest. That did work. He had my bone marrow. Two weeks later I had my answer. After six years of test. My doctor told me I had sarcoidosis. He said if you had to have a disease sarcoidosis was the one to have. I did want any disease. He said there is no cure and we don’t know a lot about it. He told me to stay healthy. Two weeks later a city councilman died from sarcoidosis. I called him and said,” I thought you said this was nothing to worry about. A man just died from sarcoidosis.” He had no real answers for me. I started my own research. I found to local doctors that were studying sarcoidosis. I worked with for a few years to develop something that worked to help control my sarcoidosis.
Sarcoidosis is an inflammatory disease that can affect almost any organ in the body. It most commonly starts in the lungs or lymph nodes. Although no one knows exactly what causes sarcoidosis, it is clear that the disease is characterized by the formation of granulomas, which are small collections of tissue and inflammatory cells. Granulomas collect in various organs of the body and can lead to chronic inflammation and scarring. In my case the granulomas affected my lungs and bone marrow.
Sarcoidosis is found all over the world. In the United States, sarcoidosis is approximately 10-15 times more common in African Americans than Whites. African American females get sarcoidosis 2 times more commonly than African American males. In Europe, the disease affects mostly Whites, with rates as high as 64 per 100,000 in Sweden.
People with sarcoidosis go to get medical attention with a variety of symptoms. Here are some of the more common symptoms reported:
Shortness of breath
Cough that will not go away
Enlarged lymph nodes
Sarcoidosis is a disease that can affect a number of organs in the body. The areas most commonly affected are:
Lungs: The lungs are usually the first organ system involved. Patients often complain of cough and shortness of breath. Ninety percent of people with sarcoidosis have an abnormal chest x-ray at some time during their illness.
Skin: Sarcoidosis involves the skin in about 25% of cases. A common lesion encountered is called Erythema Nodosum, which is characterized by tender red nodules on the anterior surface of the legs. Also seen are Skin Plaques, which are purple, often raised lesions on the face, buttocks and extremities.
Lymph nodes: Enlarged lymph nodes (lymphadenopathy) are very common findings in sarcoidosis. Many of the lymph nodes inside of the chest are enlarged. Lymphadenopathy rarely causes a problem unless the amount is massive.
Sinuses: Up to 20% of patients experience nasal stuffiness and/or other symptoms of upper respiratory tract involvement.
Eyes: Eye involvement also occurs in about 25% of patients and, without therapy, can lead to blindness. Other eye problems can include blurred vision, tearing and photophobia (bright light in the eyes is uncomfortable and/or painful).
Heart: Approximately 5% of patients have significant heart involvement.
Nervous system: All parts of the nervous system can be involved in sarcoidosis. About 5% of sarcoidosis patients experience nervous system involvement. Unilateral (one-sided) facial paralysis is the most common manifestation and has sometimes been misdiagnosed as Bell’s Palsy or stroke.
Sarcoidosis can also affect joints, muscles, bones, liver, kidney and your spleen.
Sarcoidosis is a difficult diagnosis to make since the signs and symptoms of the disease mimic many common illnesses. Patients are often diagnosed with a chronic cough or bronchitis.
There are no blood tests to diagnose sarcoidosis, although there are a couple of lab findings. Elevated angiotensin-converting enzyme level and elevated urine calcium level are often found when you have sarcoidosis. A chest x-ray is often helpful in making the diagnosis of sarcoidosis. A finding of “bilateral hilar adenopathy” is a benchmark of sarcoidosis, but it’s occasionally seen in other illnesses.
The only certain way to diagnose sarcoidosis is with a biopsy of an affected organ, in conjunction with a careful examination of a person’s medical history, x-ray findings, and physical examination. During a biopsy, a small portion of tissue is taken from the body. Often the lung, a lymph node or skin are biopsied and analyzed under the microscope. Often, lung biopsies are completed in conjunction with a lung bronchoscopy. In my case they used bone marrow.
The overall prognosis for people with sarcoidosis is quite good. The majority of individuals who are diagnosed with sarcoidosis recover completely and are not left with any significant impairments. About 50% of patients have some permanent organ damage, but for most this is mild and rarely progresses.
In approximately 15-20% of cases, the sarcoidosis remains active or recurs intermittently. In another 10% of those affected with sarcoidosis, the disease is extremely severe and can lead to death.
Glucocorticoids are the mainstay of treatment for sarcoidosis and the majority of patients in the United States are treated with Prednisone, an oral steroid that is used for a variety of illnesses. The major question is not what to give to patients with sarcoidosis but when to give it. Some feel that unless a patient is experiencing severe, active pulmonary sarcoidosis that is safe to observe without therapy for 2 to 3 months. If the inflammation does not subside by itself, then therapy is started. Each case is different so it is important to ask your doctor about the risks and benefits of therapy in your particular case.
My quest to find the cause of not feeling myself took a number of years. I never let the doctors tell me it was all in my mind. And I still don’t want to have any disease but I live with it.