What does my CT scan mean?
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"It is important to make several points about the staging system. First, is only a chest X-ray staging system. It tells you nothing about involvement of sarcoidosis outside of the lungs. Second, it is in general, a poor staging system. Most sarcoidosis experts do not use it because it's so poor. It has a few major problems. The first is that it's inaccurate. When you do much better views of the lungs by chest CT scans, you find out that the actual stage is different than what appears on chest X-ray. The next problem with the staging system is that it does not predicit the need for therapy, the level of disability, or the prognosis IN AN INDIVIDAL PATIENT with any good degree of accuracy. That is, if you had 100 patients with stage 1 disease and 100 with stage 2, the stage 1 would have better pulmonary function, less pulmonary symptoms, and a better prognosis. BUT many in the stage 2 group would have better pulmonary function, less pulmonary symptoms, and a better prognosis than in the stage 1 group...you can't tell what will happen to one specific patient. Probably the most useful part about the staging system is that patients with stage 4 generally have poor pulmonary function and have the worst prognosis. But I don't put too much weight on this staging system...it is antiquated and doesn't help me much at all."
It is important that you have the correct tests done to determine your systemic sarcoidosis involvement. You can get accurate, up-to-date information about sarcoidosis at www.sarcinfo.com This is a medical "website" which was created by Dr. Trevor Marshall to conduct an Internet-based observational-clinical-trial of therapies which can cure sarcoidosis.
Many of the patients in the SarcInfo study are health care workers-- Doctors, Nurses and ex-Nurses. Therapy is prescribed and monitored by the patients’ personal physicians. There are over a hundred patients on the Marshall protocol now and over 95% are showing a dramatic improvement without further risk to their health.
Meg Mangin, R.N.