Hi, my name is Diana and I am brand new to this community and very active in MS communities with a blog and active on "Patients Like Me". I am kind of an autoimmune marvel -- I bet many of you can relate:
- I am diagnosed with relapsing-remitting MS
- I have asthma
- I have Hashimoto's Thyroiditis (thyroid totally removed in 08)
- I have Stage IV Endometriosis (some theories that it could be autoimmune).
I just went through the last part of a hysterectomy and they removed my appendix too. The doctors said it was one of the largest appendixes they had ever seen? Why?? Hmmmm.
My neurologist did several autoimmune disease blood tests on me and the ACE came back highly elevated (surprise, surprise). I am an disabled Army vet who was stationed at a base (now closed) believed to have many toxins like Dioxin. I also worked in a book bindery with a lot of chemicals.
I've gone on a bit ... but I was just wondering really what highly elevated ACE levels mean from your understanding. I can read medical stuff, etc ... but I want to hear from peers. My MS specialist/neurologist has ordered a CT of my chest with contrast. Can anyone give me an explanation of what that might show.
My breathing has never been stellar (since the 90's at least) and I do get short of breath way too easily but work on exercising within the confines of what MS will allow me. I have a lot of strange stuff going on in my body (a fever for years of 99.7 to 100+). I never knew what that could be.
Now I am dealing with menopause brought on by the removal of my last ovary and the excision of endometriosis adhesions and implants (along with my appendix). I am now 1.5 weeks post-op and just waiting to schedule that CT scan.
I was tested for Sjogren's a year ago and that came back normal. My eyes are always my nemesis and it seems that MS attacks them the most (along with bladder). Dry eyes are a fact of my life.
I'm just trying to understand ... this is a new area for me. Totally new.
Thanks for your posts and support and experience. I can offer the same in the area of MS, but here ... this is new territory.
Take care!
Diana
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Positive ACE blood test - High Levels - Sarcoid?
- By gkygrl
- Posted November 6, 2009 at 10:27 am · 4 replies
- In Living with sarcoidosis
- Shared with the public
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- By ellj
- Posted November 6, 2009 at 7:47 pm
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ACE is a test for inflammation. It does not diagnose sarc. Sarc is a diagnosis of exclusion, inclusion and many many tests: CATs MRI, PET scans, biopsies, multiple types of blood work and so forth. ACE readings that are high mean inflammation.
CT chest will show anything unusual in your lungs and chest area. In sarc, the radiologist can see enlarged lymphs, calcification, abnormal masses and scarring. It also displays the grandulomas to some extent. But, I would assume CATs are also used with MS to check on lungs as well.
Your best bet is to search on line about these tests. labtestsonline.com is a good source.
- By IreneMarie
- Posted November 6, 2009 at 10:02 pm
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You might identify with more symptoms on this site.
http://en.wikipedia.org/wiki/Sarcoidosis
Before I was diagnosed with Sarc it was suspected I might have MS. Then we played the long game of process of elimination, but no one will do the definitive thing - biopsy. So for now it is a differential diagnosis of Sarc. I pretty much fit that mold for the last two yrs.
Regards,
I.
- By gkygrl
- Posted November 16, 2009 at 9:57 am
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I remember when I was diagnosed with "asthma" in 1990 that the doctor saw "scarring" on my chest x-ray. Is that more compatible with Sarc than with asthma. My original diagnosis was not through a pulmonologist or allergist, but a Primary care doc because of tons of shortness of breath and lots of bronchial infections.
Can Sarc mask as asthma???
Looking forward to my chest CT to see what is says.
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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