Awaiting my first consultation with a specialist concerning the probable diagnosis of sarcoidosis is proving difficult. The robust health of the Jones family & the very rare incidence of anything other than the mildest of illnesses has not prepared me for the presence of a potentially debilitating disorder.
I see the ophthalmologist on Monday. Two past consultations have indicated that he's not very forthcoming so I'm not optimistic about willingness on his part to discuss a condition that falls outside his immediate area. I'm not due to see the thoracic specialist until October 4th, &, given my current state of deep unease, five weeks is too long a time to wait for a specific & detailed diagnosis. Somewhat against principle, I've asked my GP to refer me to a private specialist for a consultation in the much shorter term.
Until some research done today, my unease was principally of paranoid nature - that old 'what-if' clause that infects every attempt to see the situation in balanced terms. However, I have discovered some very respectable medical data that declares a clear link between chronic uveitis, which I have had for some 5 years now, & chronic sarcoid. It seems that systematic research has demonstrated that uveitis as a symptom of sarcoid can precede the onset of actual sarcoid by up to 11 years. In other words, the uveitis can manifest itself for a period of time without any other sarcoid symptoms becoming evident.
This undermines somewhat the reassurances from my GP that the fact that my uveitis began 5 years ago & the recent x-ray & blood test results revealed only 'mild abnormalities' indicate that my sarcoid is developing very slowly. Given the data above, the uveitis may well have been under way long before the actual sarcoid of which it is a symptom made its appearance. The 'mild abnormalities' evident now may simply be the first stages of what could eventually emerge as chronic sarcoid.
Yes, anything can be proven & disproven by reference to conflicting data on the Internet. A little knowledge is indeed a dangerous thing. This is not, however, some immutable truth. I am accustomed to scrutinising & processing information & I can, I believe, distinguish between hysterical conjecture & diligent research. I'm disturbed by the associations made between chronic uveitis & chronic systemic sarcoid & I shall, of course, present them to the ophthalmologist on Monday. I think that it's likely that he'll confirm the findings.
This has been a long night. It's now 03:18. I'm going to take a break from the Patteran Pages until the medical picture is rather clearer. Hopefully that will be in days rather than weeks. Halt, lame or blind, I shall be back!