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Wohali

ANA blood tests

8 posts in this topic

For those with CREST who show Scleroderma symptoms do you have positive ANA results on the strictly Sclero blood tests? Sorry I forget the names of the tests.

 

I'm having some tightening and shiny skin on the tops of hands, arms and lower legs so I'm not sure if that really is Sclero symptoms. My ANA is positive for CREST (centromere), but all other autoimmune tests including C-Reative, Lupus and Sclero and RA are negative. Is this normal for CREST? Oddly enough I have had a variety of rashes on arms and chest. I thought a couple times I had a butterfly rash but my dr told me I had a rash caused by B19 infection the last time I had one come up.

 

None of my doctors have ever had a patient with CREST so neither they nor I have anyone to compare my tests with.

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I know I have been diagnosed with CREST and I am ANA positive and have the centromere antibodies. No other positives though. Just weird ranges with my nutrition and some of the usual cbc stuff.

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Chefkat,

 

I have CREST and have tested positive ANA. It was pretty high at first but has gone down since being on Plaquenil. Scl70 is also positive but I was told by my doctor to take that with a grain of salt.

I have Lupus like antibodies but tested negative for actual Lupus.

(which is totally confusing I know). I have the looping capillaries visible to the naked eye so no test was required for that.

 

Karen

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Hello Wohali

 

There is no one test that can rule sclero in or out rather it needs to be a diagnosis resulting from the culmination of info that can include bloodwork. However because you can have a negative ANA and still have sclero bloodwork alone can't provide a definitive diagnosis. I have diffuse sclero and my ANA is negative.

 

With CREST/limited sclero the skin tightening is usually limited to the extremeties with diffuse it travels to the upper arms, thighs, abdominal wall and chest.

 

At diagnosis I had skin tightening on feet, calves, thighs, abdomen, hands, forearms, upper arms and shoulders but negative ANA. A biopsy confirmed the diagnosis made upon examination.

 

There is a list of sclero experts worldwide on this website and it may be worth seeing who is near you if your current doctors have no experience of this disease. You need to make sure you have all appropriate tests, the results of which are viewed by someone experienced with sclero so that you can be given the most effective treatment plan. Please don't plod along with a doctor who is not experienced in this disease.

 

Hope this helps.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Amanda,

 

Concerning the CREST/limited sclero have you ever experienced or heard of it affecting say the abdominal muscles? I've been having this weird discomfort around my waistline that feels like one's muscles feel when one is holding in their gut ie:contracting the stomach muscles. I also feel a "tightness" around the sides of my ribs and worry is the sclero tightning that area? Also I had severe itching lately on my sides and whenever the skin on my lower legs tighten it itches like crazy before the skin starts getting tight and hard.

 

I do have postive ANA but its only for centromere pattern. All other autoimmune type tests come back negative.

 

Seeing a sclero specialist isn't an option at this point. I have no job, hardly any money, will only have health insurance another month and have no one to take me to long distance appointments. Unlike England, here in the US health insurance is a luxury and not everyone has it.

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Hi Wohali,

 

My rheumatologist told me a person does not need positive labs, ANA, centromere or scl 70 and etc at all to be diagnosed with scleroderma. They are useful for diagnosis but not necessary. I read somewhere that people with scleroderma will at least test positive for ANA at some point during the course of their illness sooner or later and most Doctorsdo not worry about it.

 

When I am feeling the worst my labs are usually negative and have been positive when feeling well. Supposidly they do not show disease activity. Some times things just don't make sense.

 

With gentle thoughts.

 

Judy


A happy heart is good medicine.

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Judy,

 

That's really interesting because years ago the rheumatologist dismissed me because I had low positive ANA for CREST and I was not hurting in all 18 tender points for fibromyalgia. Also he looked at my fingernail to diagnose Raynauds when its not my hands so much as my feet that are affected by it. My feet were actually turning blue in his office because it was freezing in there. Maybe he keeps it cold on purpose? He dismissed me saying nothing was wrong with me and ever since my general practitioner's and the cardiodologist have been seeing me for the CREST. My ANA has been highly positive at times so they don't doubt me and my current general practitioner knows what the skin tightening, shininess, sclerodactyly and telangiectasia looks like therefore he can see that I obviously have it.

 

Is there any logical reasoning that we feel better when the ANA is highest? I always thought that a high ANA meant lots of damage was occurring?

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Hello Wohali

 

When the skin on my abdomen was tight it felt a bit like a contracted muscle. I could not lay on my front as there was not enough give in the skin to allow me to stretch at the midrif.

 

Antihistimines and steroids can be effective for itching along with topical creams, some say menthol helps but I never tried it. The itching does improve but for me anyway it's always around. It was one of my first symptoms and having no idea what was wrong I was going potty from tit, couldn't sleep, wear clothes properly etc.

 

I do know that whatever you use for the itching keeping the skin well moisturised is essential.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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