The following is a posting from Granuloma Buster I thought was very intersting, Luiggie.
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....I keep reading where they say (in books) that this supposedly goes away by itself, but I haven't heard of or met people who can honestly say they have this magical (full) remission. Usually it's improvement to some degree, but I think the spontaneous remission thing is mostly a myth.
I've been doing alot of reading to trace where the misinformation on Sarcoidosis originated. I found some interesting historical quotes that referred to it as a "benign disease"on the WASOG website (the part of the site that has the history of Sarcoidosis on it). Apparently the meaning got lost in the translation and was passed along through generations. The name Sarcoid apparently came from the appearance of lesions on early patients that looked like Sarcoma but were "benign" as in non-cancerous. So it loosely translates as carcoma-appearing. The early doctors did not mean benign as in minor, they meant non-cancerous, but definitions got misconstrued over the years. To this day the public misperception remains. I'm not convinced about the racial demographics either (that the severe form almost always is only found in blacks and Norwegians), and am trying to find out where that folklore came from. I'm also interested in how it came to be classified as a lung disease rather than known as a systemic autoimmune disease (which is actually closer to accurate). Most text I have found does refer to it as "a multi-system disease of unknown origin", and many of them mention autoimmunity and the likelihood of a bacterial cause, but when describing symptoms most of the material tends to emphasize the respiratory symptoms and hilar lymph node involvement within the lungs. Many descriptions leave out Vitamin D and Calcium metabolic problems and sun sensitivity. I was surprised when I started this search just how short and over-simplified many of the existing descriptions are. That in itself would likely explain why doctors often don't recognize things like neurosarc and many other obscure symptoms that are well-recognized among patients but not necessarily by doctors or by anyone else in the healthy community. I have doubts as to whether the stages 1-4 that have been classified are always that linear, especially in patients who have other symptoms long before lung involvement or where there may never be lung involvement. In my case I have had other symptoms for at least 10-12 years before any lung involvement, yet I would not consider my disease early-stage. I have had severe symptoms in other organs such as the brain, i.e, seizures in the left temporal lobe in1986 that were severe enough to need hospitalization and loading doses of Dilantin to prevent status epilepticus, as a result, lost ability to walk for 5 weeks because of trouble in the balance-center of the brain, intermittant cognitive impairment, and more recently, strokes. In about 1985 I began having a very strange neurological symptom that caused me not to be able to undertand traffic lights. When facing a red light or green light I got mixed up as to whether the light was meant for cars or for pedestrians, for one direction of the intersection or the cross street. I almost got hit by cars while crossing the street several times because I made the wrong interpretation. I had never had this problem before and nobody could figure out the cause. In 1981 I forgot how to talk for about a month solid. Additionally I have suffered sudden and unpredictable inability to comprehend speech and written material on and off throughout my lifetime. I have also lost my talents for periods of several months to several years and nobody could explain why. This was accompanied by pain, fatigue and a systemic feeling of weakness and faintness. I have suffered from Migraines for years (since about age 17), and near fainting spells as far back as second grade. I also had severe muscle spasms that began at around age 9 in the side of my neck, in my toes and bottom (instep) of my feet (also unexplained). I suspect these were all manifestations of Sarcoidosis and that I have had this disease since childhood although it could not be diagnosed at the time. I am now 42.
I often wonder how many other people had these odd symptoms starting in childhood. Probably alot more than one would think.
GranulomaBuster 
