Thursday, October 27, 2011 UnderAttackinNV asks

Q: I was diagnosed with Sarcoidosis. for several month hi sed rates ranging from 30-40 consistently over last 11 months, & swelling in joints now face. Now Sed rate is 5. CRP elevated. RBC good. ele RDW.

I was ruled out RA and proceeded with Sarcoidosis treatment with hi doses of predinisone as much as 40-50mg day. Now 10mg daily along with Hydrochloroquinine and Colcrys for joint pain (non-gout). Now I do not have inflammatory marker, but still have swelling in face, joint pain? CRP is 0.9 with high ref range 0.8. What is going on with me because she seems great as a doctor but I feel like my body is constantly under attack all the time. Lost 1/3 volume of lung capacity so I am on oxygen flow when in motion. (Pulmonologist ordered) The eye pain was ruled as dried nerves due to Sarcoids & I was then diagnosed with Glaucoma yeserday. Now I am back off to the ENT to look at the gland swelling under ear and facial swelling for possible biopsy to tell what this is...I am frustrated at all these blood tests and what they mean. Elevated RDW. Am I out of woods now that Sed is back at 5? It has dropped before and then shot back up?

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Answers (1)

Lene Andersen, Health Guide

10/27/11 12:33pm

I'm sorry to say that this question is beyond my knowledge. None of the people went to questions on the site are doctors, but answer based on our own experiences and whatever knowledge we've managed to pick up. There are a number of strange autoimmune diseases that can be very hard to diagnose so there are a number of things to choose from. Has your doctor checked for lupus? Connective tissue disorder? Again, I am not a doctor and I'm not basing these suggestions on sound medical judgment, but… Sometimes lupus can be even harder to diagnose than RA and it can involvea lot of strange systems within your body. Karen Lee Richards on our Chronic Pain site has written more about lupus and if any of that rings a bell, meeting talk to your doctor about it.

The best thing I can recommend to you is to seek a second or perhaps even a third opinion. Sometimes, a new pair of eyes may be able to see something your prison doctor can't.

good luck! Please keep us posted?

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Q: I was diagnosed with Sarcoidosis. for several month hi sed rates ranging from 30-40 consistently over last 11 months, & swelling in joints now face. Now Sed rate is 5. CRP elevated. RBC good. ele RDW.

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