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Old 05-06-2012, 03:28 PM   #1
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Pediatric MCTD? Lab results and Prep. for Rheumy Appointment??

Thanks so much for reading this - I am just trying to understand what is happening to me. I got sick a long time ago and after lab work, scans, Spinal tap etc. it was determined that I had CFS (Chronic Fatigue Syndrome) and fibromyalgia. I have been periodically tested for autoimmune diseases in the intervening years and everything has always been 'normal.'

Symptoms : Fatigue (horrible), extreme pain (in joints and in muscles), GERD, fever, allergies, stiffness and swelling of joints, feel sick all the time, fingers are swollen, etc.

My doctor recently decided to check for autoimmune problems (again) and here is what came out positive:

1st blood test:
ANA 1:80
dsDNA>200

dr. ordered a re-check and:

2nd blood test (1 month later):
ANA 1:320
no dsDNA


I was given Prednisone for 2 weeks then taken off prednisone. 4 days aftyer my last dose of prednisone I then had:

3rd blood test

Direct ANA level: 264
Anti-RNP Positive
SCL-70 Positive

My gp is sending me to a rheumy to see if I have MCTD. Can you get this as a kid? Maybe I've had this all along and not CFS. What do you think?

~ Is it possible I have an autoimmune disease and not cfs?

~ My Doctor said that people with CFS can have a positive ANA is that true?

~ What kinds of things do I tell the rheumatologist (I have an appointment next month)?

~ Can I have MCTD without raynauds?

Thanks! RogueBlond

Last edited by RogueBlond; 05-09-2012 at 09:06 AM.

 
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Old 05-07-2012, 08:58 AM   #2
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Re: Pediatric MCTD? Lab results and Prep. for Rheumy Appointment??

What was your pattern? As to levels of various antibodies, just because they have been detected but not at disease causing levels is not necessarily a cause for concern. Many people have them transiently and they can be caused by a passing virus, or even just being related to someone with an autoimmune disease. I myself have occasionally had ds/DNA, low levels, but I don't have lupus, I have a different AI. MCTD, or indeed, any autoimmune disease is diagnosed not just on the basis of labs, but symptoms as well. I know that many rheumatologists do not consider a titre of 1:320 positive for disease, even though the test results say "positive". I think the main question is why you are questioning your Dr. Is this a GP or your Rheumatologist. If you don't have faith in your Dr, no amount of correct diagnosis is going to help. If you feel it necessary, get a second opinion. As far as what to tell a rheumatologist, your symptoms are the place to start. You might ask if these are in line with your current diagnoses. And what your treatment plan should be, if it is a possible autoimmune disease, if not, where is your best place to get symptom relief, which is pretty much what it's all about.

 
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