Thursday, February 2, 2017

7 Years in "Remission" and it's back?

When reading and researching sarcoidosis back in 2008-2010 my findings were that a good percentage of people who suffer from sarcoidosis go into remission after about 2 years. A very small percentage ever had it returned or that it was highly unlikely after having it for the short bout that sarcoid would return. I'll mention that those outside of this suffer from sarcoidosis their whole lives.

I have been having nasal and sinus issues that were thought to have stemmed from my allergies for the last 5 years or so. They have been getting worst. I changed ENT doctor and this new lady upon learning about my history with sarcoids was convinced that's what was going on again. She urged me to see a pulmonologist and to get an ACE test to see where my levels are.

I saw her for about a year and change before I started to get sick of hearing it was sarcoids. She even went ahead and said, "if it looks like a duck and quacks like one then it's probably a duck" I felt that this was an easy way out and it would be harder to find the real reason for my sinus issues.

This really pissed me off and I sought out another doctor. Saw him for the first time a month ago and he also took the sarcoid route claiming he saw granulomas in my nose. He ordered an ACE test which today i find the results. My ACE levels are at 74.

ACE stands for Angiotensin Converting Enzyme and converts angiotensin 1 to angiotensin 2.

typical ace level in the blood is 8 to 53. Usually in a sarcoid patient the level is on the high side. In my case the test came back 74.

Usually high is an indicator that the disease is active but as I have said before there is no definitive diagnosis for sarcoidsosis and it's a sort process of elimination.

either way stay tuned new adventures to come. Please feel free to comment on your ace levels and experience.

Sarcoidosis in 2012

Not sure where sarcoidosis is in 2012 as far as research and delopement for treatment goes but I can say I have noticed 2 things. An increase in traffic on this blog and a ton of more blogs. Both are great because it can only mean increased awareness. At first I thought it meant more people with sarc but then this brain of mine got a volt of smartness that brought me to the conclusion people dealing with this horrid disease have always been around it's just that they are talking about it more.

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United