I was referred to rheumy due to a positive ANA and a very low vitamin D with a co-presentation of enlarged liver and spleen.
I have many sx of lupus so the referral didnt surprise me. I have joint pain, joint aches, reynauds syndrome, number fingertips, rash on my chest, mouth ulcers, headaches, dizziness, brain fog, fatigue to name a few.
When the rheumy saw me, he too felt like the presentation sounded a lot like Lupus.. when he examined me he even called the rash on my chest by a name "something" sign, and said that was an indicator of lupus. When I told him I did get occasional mouth sores, he really perked up and thought probable Lupus and ordered more labs.
I received the copy of my labs today and I am not surprised to find the ANA is still positve, but the reflex titers indicitive of Lupus are all normal (dsDNA, SSA, sss, SM) BUT...........
the reflex titer Centromere B came back positibe and elevated. Normal is 0.0 - 0.9 and mine came back 2.8.
So there is something going on, but my confusion is that the disease association on the lab slip for the antibody is Scleroderma limited.
But I have NO symptoms of scleroderma - no skin involvement at all. I have complained that at times it feels like a tight band around my chest or like its hard to get air in sometimes and sometimes short of breath - but I read that too could be Lupus.
I read now that perhaps that could be a scleroderma thing?
I am so confused. I was preparded to hear lupus - I was not prepared for this and I dont feel like my symptoms match.
Can one still have lupus without the other reflex titers as positive AND what are the symptoms of systemic sclerosis sine scleroderma?
What does this mean? What meds? and would I have this horrific joint pain with it. I hurt so bad today I winced.
It is possible for you to have two conditions. And I would think it is possible for the labs to pick up on somehing before you realize you have symptoms.
Do you know your ANA pattern and the titer #?
I looked up Centromere and this is what I found out -
The anti-centromere pattern does more than just detect the presence of ANA protein. This particular pattern often occurs in patients who have scleroderma, especially those scleroderma patients who have a condition called CREST syndrome. It also may occur in people who have Raynaud’s disease, and sometimes in people who do not have either of these conditions.
Symptoms of CREST
By Mayo Clinic staff
While some varieties of scleroderma occur rapidly, signs and symptoms of limited scleroderma usually develop gradually. They include:
Tight, hardened skin. In limited scleroderma, skin changes typically affect only the lower arms and legs, including fingers and toes, and sometimes the face and throat. Skin can look shiny from being pulled taut over underlying bone. It may become difficult to bend your fingers or to open your mouth.
Raynaud's phenomenon. This condition occurs when small blood vessels in your fingers and toes spasm in response to cold or emotional stress, blocking the flow of blood. In most people, the skin turns white before becoming blue, cold and numb. When circulation improves, the skin usually reddens and may throb or tingle. Raynaud's phenomenon is often one of the earliest signs of limited scleroderma, but many people have Raynaud's only and never develop scleroderma.
Red spots or lines on skin. These small red spots or lines are caused by the swelling of tiny blood vessels (telangiectasias) near the skin's surface. They are not painful and occur primarily on the hands and face.
Bumps under the skin. Limited scleroderma may cause tiny calcium deposits (calcinosis) to develop under your skin, mainly on your elbows, knees and fingers. You can see and feel these deposits, which sometimes may be tender or become infected.
Swallowing difficulties. People with limited scleroderma commonly experience problems with their esophagus — the tube that connects the mouth and stomach. Poor functioning of the muscles in the upper and lower esophagus can make swallowing difficult and allow stomach acids to back up into the esophagus, leading to heartburn, inflammation and scarring of esophageal tissues.
I have a postive ana and a centromere of 5.5. I was first diagnosed in 2005 with undetermined connective tissue disorder with CREST syndrome and symptoms of scerloderma with scarring in my lungs, shortness of breath, calcium build up on fingers/toes and acid reflux. 2yrs ago a different doc said NO to scerloderma disease..but he is the one ordering these most recent tests.
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