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Edoyle

No symptoms ANA and ACA positive

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Hello all, we got the call today that we have been dreading.

 

Our 13 yr old daughter was referred to a pediatric rheumatologist by her primary doctor. I took her in because she’s been experiencing terrible shoulder and knee pain all summer. I have RA so I was afraid she might have the pediatric form of it starting. She was negative for rheumatoid factor but positive for ANA and ACA. The rheumatologist confirmed the findings and said she has CREST.

 

Of course I’m devastated and perhaps I’m grasping at straws but she has no CREST symptoms at all. Her only symptoms to this day are extremely painful shoulders and knees. What are your thoughts on this? 

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Hi Edoyle,

 

Welcome to these forums!

 

I'm sorry to hear that your daughter has been diagnosed with possible CREST. I can understand how worried and concerned you're feeling and send my best wishes to you.

 

Please note that I have no medical training, but although your daughter has had positive blood test results, it does not necessarily mean that she will develop full blown CREST (limited scleroderma), as many of our members can testify. The reverse is also true. Far more important are the clinical symptoms of the disease, as the blood tests are only a small part of the diagnostic process. This complex disease does affect everyone differently and so it's very difficult to predict how it will develop.

 

I've included a link to our list of scleroderma experts (some of which specialise in Juvenile Scleroderma) and we do recommend that our members consult a Juvenile Scleroderma Expert, as it is very important to consult a scleroderma specialist for the proper diagnosis and treatment of scleroderma. This is really the best person to help and advise you of the most suitable treatment for your daughter.

 

Kind regards,

 

 


Jo Frowde

ISN Board Member

ISN Secretary of the Board

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Edolye,

 

My son was diagnosis'd,  at age 18,  with sine scleroderma because of positive blood work, esophageal dismotility, extreme fatigue, major depression, and chostrochondritis.  The specialist said he had Undifferentiated Connective tissue disease (UCTD) and he was placed on Plaquenil, which really helped with his symptoms and fatigue issues.  My concern for your daughter is her shoulder and knee pain - have they X-rayed her neck?  We found out, at age 27,  that Gareth also had degenerative arthritis and his vertebrae between C3/4 - CC7/8 had disintegrated and was pressing on his spinal cord.  He was pretty much wheelchair bound for any sort of walking distances and no doctor even thought to x-ray his neck!  It happened because I asked my primary care physician to order the X-ray of the neck to rule out C1/2 instability, found in kids with Down's Syndrome (DS).

 

I have learned a lot over the past 12 years and one major factor is that autoimmune diseases have a mind of their own and don't follow the rules and guidelines they're thrown in to by doctors!!!   :dont-know:    Treat the symptoms your daughter does have now and be an advocate for *off the wall* ideas/problems.  

 

Take care, everyone,

Margaret

Mom to Gareth, 30 years old, DS/ASD

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Thank you Margaret and Jo for the replies. We haven't done any imaging tests yet. That will be done at her next rheumatology appointment in a few weeks.

 

I was fortunate to find Doctor Kathryn Torok at Children’s Hospital in Pittsburgh who specializes in pediatric scleroderma. We made an appointment to see her in November for a second opinion. 

Many thanks,

Erin

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Hi, I had Gareth in to Pittsburgh, too!! He saw Dr Metzger.  He said that because he had no skin issues, Raynauld's, or capillary damage that it wasn't sine scleroderma, but UCTD, even though he had the + blood work for scleroderma. 

 

I've learned through the years that they treat the symptoms; not worrying about the *name*.  Gareth's issues have always been internal.  We're in State College, Pa.

 

Take care, everyone.

Margaret

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Hi Edoyle,

 

I'm so very sorry to hear of your daughters possible diagnosis due to her lab work. As Jo mentioned, it doesn't necessarily mean she will develop CREST. I'm super happy to hear however that you are seeing a doctor who specializes in this! Please do keep us posted, and much love and support to you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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