Question on Scleroderma/ Skin

[kerry23]

Okay, this kid, 22 year old male is still not diagnosed and has been to see two Rheumatologist.  Now the last one, you would figure, would test him for Sclero because his mother has it???  Don't you think?  I have noticed at our medical facility ( we call it the WalMart of medical facilities) just blows you off when your ANA comes back negative.  Even last lyme test was negative, no positive bands at all.  Yet he complains every day joint pain and stiffness in morning (like me).  Doctor blew off the Fibromyalgia diagnosis, due to him being male and young.  I don't buy that either.  We don't have knowledgable doctors around here, it's a nightmare.

Has anyone out there had a NEGATIVE ANA BUT HAS AUTO IMMUNE DISORDERS, IF SO WHAT TESTS DID THEY RUN IN PLACE OF ANA.  WHAT CAN I ASK THE DOCTOR TO RUN?

TOOK HIM TO GASTRO LAST WEEK AND HE IS TESTING MY SON FOR SCLERO, THANK GOODNESS!  BUT I MENTIONED TO HIM TO TEST HIS ENA BUT DOC NEVER HEARD OF IT AND THOUGHT I WAS NUTS.  WELL, IT DOES EXSIST.  SECOND QUESTION:  ANYONE OUT THERE HAVE AN ENA TEST?  WHAT DOES THAT REVEAL?

Sclero patients:  Does the skin start out dry, then tighten, I have sclero but not in the skin but I am always dry but then again sjogrens, I would presume, would do that..

THANK YOU ALL FOR YOUR TIME, THIS SITE IS WONDERFUL

[Suzanne]

[user=2645]kerry23[/user] wrote:

Has anyone out there had a NEGATIVE ANA BUT HAS AUTO IMMUNE DISORDERS, IF SO WHAT TESTS DID THEY RUN IN PLACE OF ANA.  WHAT CAN I ASK THE DOCTOR TO RUN?

I think it is hard to get testing because, in the scheme of things, these diseases are rare and they just don't expect to see them – but once you are seen by a specialist, it does seem like you should expect some answers!  Especially with family history, it seems like they should rule everything out.

My daughter is ANA-neg, RF – neg, anti-CCP neg.  Her only abnormal labs at dx were sedrate (ESR) and CRP.  Her CRP stays high most of the time, but not outrageously high anymore.

We were told her JRA is a 'diagnosis of exclusion' – there is no one definitive test and they had to rule everything else out first.  I'm glad you are seeing the gastro and maybe that will give you some answers. 

Have you looked at any images of psoriasis?  I think that can look like dry, scaly skin. 

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[reesak]

Kerry23 –

 

I have RA (most likely induced by Lyme) and have never had anything positive except for my RA factor (slightly elevated) and CCP (slightly elevated).  None of my inflammation markers (ANA, CRP, sed rate) have ever been positive.

 

Hope this helps and you find the answers you are looking for.  I have ditched my rheumatologist and see a functional medicine doctor. 

 

ReesaK

[MINOCINMAN]

[user=2645]kerry23[/user] wrote:

Okay, this kid, 22 year old male is still not diagnosed and has been to see two Rheumatologist.  Now the last one, you would figure, would test him for Sclero because his mother has it???  Don't you think?  I have noticed at our medical facility ( we call it the WalMart of medical facilities) just blows you off when your ANA comes back negative.  Even last lyme test was negative, no positive bands at all.  Yet he complains every day joint pain and stiffness in morning (like me).  Doctor blew off the Fibromyalgia diagnosis, due to him being male and young.  I don't buy that either.  We don't have knowledgable doctors around here, it's a nightmare.

Has anyone out there had a NEGATIVE ANA BUT HAS AUTO IMMUNE DISORDERS, IF SO WHAT TESTS DID THEY RUN IN PLACE OF ANA.  WHAT CAN I ASK THE DOCTOR TO RUN?

TOOK HIM TO GASTRO LAST WEEK AND HE IS TESTING MY SON FOR SCLERO, THANK GOODNESS!  BUT I MENTIONED TO HIM TO TEST HIS ENA BUT DOC NEVER HEARD OF IT AND THOUGHT I WAS NUTS.  WELL, IT DOES EXSIST.  SECOND QUESTION:  ANYONE OUT THERE HAVE AN ENA TEST?  WHAT DOES THAT REVEAL?

Sclero patients:  Does the skin start out dry, then tighten, I have sclero but not in the skin but I am always dry but then again sjogrens, I would presume, would do that..

THANK YOU ALL FOR YOUR TIME, THIS SITE IS WONDERFUL

I have somwhat of a medical background and have researched SD since being diagnosed about 6 weeks ago. One thing that is certain and agreed to by all POsitive lab markers mean something and often so do negative ones for SD, RA, AND OTHER illnesses. There are many examples of members of this forum who have SD with negative lab markers, including me. I just had a positive ANA, but rest, including SCL 70 and ACA that were negative.

The clinical picture is 90% of diagnosis. GOOD LUCK.

 

 

GOOG

[Junie]

Has anyone out there had a NEGATIVE ANA BUT HAS AUTO IMMUNE DISORDERS, IF SO WHAT TESTS DID THEY RUN IN PLACE OF ANA.

Not one of my daughter's (15 yrs) tests are positive (RF, anti-CCP, ANA, CRP, and sed rate).  All her numbers are low and she has still been diagnosed with JRA.  Her diasnosis came mostly from her joint pain and family history. 

Not sure that helps much, but it has been a mystery to me too.  Her rheumatologist insists that this is normal for a young person….

 

[luvmywonderfulkids]

My son has never had a positive test either but he did have a skin biopsy which came back positive for morphea. The only elevated test he has had was his EOS which is now normal.

Sue — Ryan's mom

[Author]

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