Sarcoidosis Support Group

Sarcoidosis is an immune system disorder characterised by non-necrotising granulomas (small inflammatory nodules). Virtually any organ can be affected, however, granulomas most often appear in the lungs or the lymph nodes. Symptoms can occasionally appear suddenly but more often than not appear gradually.

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mommies4 04/12/2011

Hi everyone ! About 5 days ago for the first time I noticed that the tops of my feet had some swelling to them,something new,Reminder I'm not yet DX'ed with Sarcoid,but do believe I may have the Neuro form of it poss.after finding talking to and reading post here.I have been DX'ed with a ( pseudotumor) or BIH,PTC IIH whatever you want to call it,April will be a year.I had a shunt LP put in in Sept. of 2010.I'm looking at the PTC as secondary possibly.Has anyone come across this or know someone that has the combo of the two ? Thanks so much for all your support ! mommies4

deleted_user 04/13/2011

Hi . I'm new to sarciod group. I have been in the Daily Strength Hemochromatosis support group for a few months. I love it. My gp tells me I may have sarcoidoisis due to high ACE. on my lab work the initials are A1C. anyway I have trouble breathing and need to see a lung specialist. I also have a nephew who was DX'ed 3 years ago and now uses a wheel chair. I want to help him as much as I can. We both are going through some depression. I want to invite him in soon. I also need support and answers. Can anyone tell me what ACE means and why do I see it as A1C on my lab report? God Bless . Mike

deleted_user 04/23/2011

I dont' know why they call it AC1 but i do know that with symtoms that suggest sarcoid haveing and evevated ACE can confrim the diagnosis and moniter the severity of the disease.

I think with normal people the ACE is usually around 4. Mine was up in the 100's. Like 115 i think. Do you know what yours was?

I was dx'ed about a montha ago and i have to use two canes. No bueno! sorry your nefew is already in a wheelchair. How are you? any assistive deveices yet?

mommies- i get foot swelling as well! it comes and goes but when they do swell it hurts!

mommies4 05/15/2011

My ACE test came back it was 28 Doc. says thats pretty normal.I've had this test before and it showed nothing so I'm a little confused My RA test came back alittle high also showing RA no,didnt get the # she just said it was elavated.My thyroid keeps coming back just under normal Poss Hypo have to keep an eye on it.My Vit. D way to low..

deleted_user 05/16/2011

Heres some info on the ACE Test - ACE is primarily ordered to help diagnose and monitor sarcoidosis. It is often ordered as part of an investigation into the cause of a group of troubling chronic symptoms that may or may not be due to sarcoidosis. ACE will be elevated in 50% to 80% of patients with active sarcoidosis. Concentrations of ACE tend to rise and fall with disease activity. If it is initially elevated in someone with sarcoidosis, ACE can be ordered at regular intervals to monitor the course of the disease and the effectiveness of corticosteroid treatment.

And your A1C could be a hemoglobin A1C - Which is a 3 month average of your blood sugar.

I had several lab tests done and several procedures incluing a broncoscopy with lavage to Dx me with sarcoid. I was DX in 10/2010.
I have several SX, and i pray that i can still havea family someday.

But as of right now, my abdominal pain and meds are in the way :(

Sorry to hear about you and your nephew.

Hang in there, we are here to support eachother!

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