LilyPony
02-15-2011, 04:58 AM
Let me begin by saying that all of my reports have been submitted to the vasculitis center at JHU and waiting for an appointment that should be in 6-12 weeks if they accept my case.
My body is saying I have fibromyalgia, which iis neither here not there and not significant.
My bloodwork has confirmed Sjogren's though they do not know if it is primary (occurring on its own) or secondary (occurring secondary to another autoimmune disease). Sjogren's is known to cause intense but nondescript vasculitis. Sjogren's, they believe, is responsible for a great deal of my symptoms and possibly everything.
The photos of my biopsy slides apparently show severe vasculitis without any 100% certainty what type of vasculitis it is. Limited Wegener's seems to have been randomly picked because it was the closest in appearance plus location of problems. Based on the photos, they are leaning towards Behcet's, not wegeners at all. However Behcet's has a tendency to cause trouble within the eye and my eye's guts are normal, just nasty vasculitis behind the eyeball with the recent addition of sinus and ear complications. The most striking fact that was noted is that I have NEVER had a positive ANCA. I was under the impression that there was an initial positive, followed by negatives.
Main thing is that any form of vasculitis has similar viable treatment options. Each form has a better treatment and mine will be determined as soon as I hopefully get into the JH clinic. Until then, I have been restarted on Septra and will maintain my 40 mg prednisone. I am doing better with it. My constant pain is shifted to intermittent pain that just lasts a few minutes. My vision is nearly normal on the bad side. Gobs of junk from mouth and nose are much less. So I'm just in a holding pattern right now until I can get the appointment to figure out the exact course of treatment from here.
My body is saying I have fibromyalgia, which iis neither here not there and not significant.
My bloodwork has confirmed Sjogren's though they do not know if it is primary (occurring on its own) or secondary (occurring secondary to another autoimmune disease). Sjogren's is known to cause intense but nondescript vasculitis. Sjogren's, they believe, is responsible for a great deal of my symptoms and possibly everything.
The photos of my biopsy slides apparently show severe vasculitis without any 100% certainty what type of vasculitis it is. Limited Wegener's seems to have been randomly picked because it was the closest in appearance plus location of problems. Based on the photos, they are leaning towards Behcet's, not wegeners at all. However Behcet's has a tendency to cause trouble within the eye and my eye's guts are normal, just nasty vasculitis behind the eyeball with the recent addition of sinus and ear complications. The most striking fact that was noted is that I have NEVER had a positive ANCA. I was under the impression that there was an initial positive, followed by negatives.
Main thing is that any form of vasculitis has similar viable treatment options. Each form has a better treatment and mine will be determined as soon as I hopefully get into the JH clinic. Until then, I have been restarted on Septra and will maintain my 40 mg prednisone. I am doing better with it. My constant pain is shifted to intermittent pain that just lasts a few minutes. My vision is nearly normal on the bad side. Gobs of junk from mouth and nose are much less. So I'm just in a holding pattern right now until I can get the appointment to figure out the exact course of treatment from here.