Author: Admin (---.gtecablemodem.com)
Date: 03-07-02 04:50
Most sarcoidosis patients have experienced symptoms that seem to be related to the Central Nervous System (CNS) or the brain. These include fatigue, irritibility, insomnia, hyperactivity, loss of memory, inability to focus, mild paranoia, and pains that defy description.
There is very little about this in the medical literature. Indeed, several leading pulmonologists have written to me saying that these symptoms have nothing to do with Sarcoidosis.
And maybe they are right.
After all, Sarcoidosis is defined as the biopsied presence of non-caseating granuloma. Neurosarcoidosis is the presence of these granuloma in a position (such as compressing the spinal cord) where they can do real physical harm to the CNS. This can be easily seen on a CAT scan or MRI. So, if the scanners can't see any physical damage in our bodies, maybe there is nothing physically wrong, maybe sarcoidosis is not the correct name for what we are really suffering from. Maybe the sarcoid is the result of something else, something else without a name...
Sarcoidosis (the actual inflammation and scar tissue) is often not the limiting factor in our lives. I know some Sarcoidosis patients that are seriously ill, in wheelchairs, but most of us, the ones still trying to live an active life and deal with technologies like computers and the Internet, seem to suffer most from dealing with effects of the neuroses and psychoses listed above. We can usually cope with our reduced lung capacity, and the other physical effects of this disease that is called "sarcoidosis". But we cannot live a 'normal' lifestyle while our brains misbehave so badly.
I had most of these 'brain' symptoms long before my lungs 'caught' sarcoidosis. I can remember standing on the playing field at high school as my mind drifted away into some trance, unaware that I was placing the sleeve of my expensive new school uniform in the exhaust of an air compressor and watching it burn. It took the pain of searing skin to wake me out of this psychosis. And this was long before any x-Ray manifestation of any disease were apparent.
After I was diagnosed with Sarcoidosis I was very lucky. I was studying in a research hospital, with access to the best minds and libraries 'in the business'. My research colleagues included endocrinologists, psychologists, internal medicine specialists, pathologists, and surgeons. I had their advice to draw on, as well as that of the pulmonologists (who were also excellent, I might add).
I was not put on all the usual medications. I had a short round of Prednisone (which mullified the pain and enhanced the neuroses but did nothing for the inflammation), but only for a month or so. Then the endocrinologists stepped in and said - "no more - no more medications until you understand exactly what you are trying to achieve with these meds. "Forget the X-Ray shadowing - it is in the past - concentrate on leading a productive lifestyle". Best advice I ever had, at any price (and it was free 
You know, for all my life, medications have just not worked right in my body! In the army they tried to control the vomiting with Stemetil. It just made the vomiting worse. In my first biopsy the epinephrine in the local anaesthetic made the anaesthesia inneffective.
There is something fundamentally different with the way my system works, maybe the same thing that caused my lungs to form those 'non-caseating granuloma' back in 1974.
Even pain itself is just a sensation. It is something our brain tells us is happening. We can use pain killers that block the transmission of those pain signals to our brains, and others that modify the way that our brains deal with those pain signals (see "Pain Management" link below).
For most of us, the cause of these "wierd sensations" is that the hormone 1,25-dihydroxyvitamin-D which is produced in our granuloma as a result of the inflammation, is poorly regulated. It surges both low and high, but usually gives the most trouble when it is high. Every sarc patient should get the value of this hormone and its precursor tested(Click here for more info). The individual values, and their ratio, will tell you a lot about the amount of inflammation and what it is doing to your brain. It is such a simple solution- why have we had to suffer so long?
This is all "easy for me to say". I am lucky - the magic bullet has come along that has controlled my brain, and it seems no worse for all those years of wear
But what do you think? Have you seen drugs that don't do what they are supposed to do for you? What do you think about the origin of your pain?
..Trevor..
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