Kiacta in Sarcoidosis - Forum

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December 1 2014 at 5:09pm
I have had lung involvement, neuro sarcoid, skin nodules and now in my airways. Most people who have the chronic form of this disease, get it in multiple places. I do hope this study will address sarcoid no matter where it appears.
November 14 2014 at 1:14am
Pulmonary function can vary due to temp,dust,chemical and even once in a store spices.Hard to avoid everything.Its easy to stress breathing at work and certain situtations encounterd out and about.Frustrating.
November 13 2014 at 11:17pm
Why not study patients who have multiple Sarcoidosis, such as Neuro, pulmonary and cardio?
WendySG responded
November 14 2014 at 10:54pm
Ny concern as well, previously I had more lung involvement, now my primary issue is muscle/nerve.
October 22 2014 at 6:08pm
I should have read the question better. What experiences have I had as a patient? I often feel like I’m crazy. Some of the symptoms do not meet the expectation of the medical providers. When I report breathing difficulties, they rely solely on the Pulmonary Function Tests. Even though my PFTs are basically static, breathing difficulty has increased.
sarky responded
November 22 2014 at 8:22am
Oh my; can I ever relate to your comment! It seems that no matter what level and/or location of severe distress I describe to a Physician, their response is to take my vitals, my temperature, my blah blah blah--ad nauseum. I am sooooo tired of hearing, "Well, your vitals look fine. Let me take a listen. Just breathe normally...uh-huh...well, I don’t hear anything abnormal blah blah blah..." How do we get across to our Doctors what WE mean, when we say that it is abnormally uncomfortable to...breathe, or stand in one place for hours, or keep our thoughts from playing hide and seek with us, or focus on any one thing for extensive periods of time, or, dot dot dot. What do we do to fix this??
October 22 2014 at 6:05pm
I would recommend having all patients with confirmed sarcoidosis particiate.