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Old 03-15-2010, 05:45 PM   #1
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lolo3132 HB User
Question MCTD questions/ I DON'T UNDERSTAND

I am fairly confused. I've been diagnosed with MCTD/SLE.

I'll read in one place that MCTD is a horrible disease to have. In another place I'll read it is no big deal.

I'll read that HIGH globulin is an indicator of SLE. Mine is very low.

I'll read that SED is high, that CRP is high. My SED has been the same for the last two 2 considered HIGH? My CRP is very low..< this HIGH? What numbers are considered HIGH?? I can't find any information on what number is considered HIGH.

My white blood, red blood, platelets, hemoglobin, cholesterol, creatine, hormones, urine test are ALL well within the so called normal ranges.

What is considered HIGH for rheumatoid factor?? Should it be zero, or is a low number (which the range for RF is anything <14 is considered NEGATIVE on my paperwork) considered HIGH??

I read all the messages here about ANA tests and number, mine is called an "ANACHOICE SPECIFIC AB CASCADING REFLEX" and there are no numbers only "positive" or "negative" as the result....AND I'M CONFUSED.

**So...If you are diagnosed with MCTD/SLE at 45 years of age and THE only symptom you have is FATIGUE, does this mean this is as bad as it gets? I mean basically I have been living with this fatigue for WELL OVER 30 YEARS. I've had none of the other symptoms on the criteria list for MCTD/SLE. I've had odd symptoms over the years (ears ringing, gums receding, insomnia.....)but nothing to write home about and nothing to run to the doctor with....nothing has occurred with great intensity, consistency, or caused any harm. I've had NO rash and NO blue fingers/hands.

PLEASE can someone enlighten me?? I am trying to have SOME understanding of this. I can read in one place one thing, then read somewhere else that completely negates what I just read. Case in point, one place says people with SLE SHOULD use NSAIDS, yet I JUST read that they should NOT. Honestly, which is right??

Last edited by lolo3132; 03-15-2010 at 05:46 PM. Reason: additional info

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Old 03-16-2010, 08:57 AM   #2
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Lolo, I think I may have found some additional information to help you.

ANA (range is 0-99, AU/ml) mine was 8 AU/ml in 2009
the test this time was called a ANACHOICE SPECIFIC AB CASCADING REFLEX ANACHOICE SCREEN, no ranges just positive or negative and mine was positive.
RNP antibody (range <1.0 neg AI) mine was 2.1 POS
I hope you don't mind but I copied these results from the other board where we were having a conversation previously. As you can see, the ANA was NOT positive in 2009 BUT the way the ANACHOICE SPECIFIC AB CASCADING REFLEX ANACHOICE SCREEN is done is that it ONLY continues if the ANA is POSITIVE. So your ANA was positive.

The ANAchoice™ Cascading Reflex begins with an ANA (Anti-Nuclear Antibody) Screen.
If the ANA Screen is positive, five antibodies are performed at an additional charge: dsDNA , Sm/RNP , RNP , Sm , and Chromatin.
If any of those five antibodies are positive, the cascade stops and the results are reported.
If all five of those antibodies are negative, four additional antibodies are performed at an additional charge: SSA , SSB, Scl-70, Jo-1.

If any of those four antibodies are positive, the cascade stops and the results are reported. If all four of those antibodies are negative, the following two additional antibodies are performed at an additional charge: Ribosomal P and Centromere B.

The cascade stops upon the first positive antibody found in a group. It is possible that antibodies in subsequent groups are also positive, but will not be added, billed, or reported.

So the test stopped at the RNP point. That is not to say that tests listed after that MAY be positive as well but you just don't know as they were not done. This is a great test for someone who is ANA positive but not helpful for someone who is ANA negative but SS-A or SS-B positive.

Please let us know what happens with your visit Thursday. Probably more testing? Hoppy

Old 03-16-2010, 09:37 AM   #3
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lolo3132 HB User

Thank you for that explanation....that made sense and will make my questions on Thursday more specific. Prior to setting up the appointment I asked if they would be willing to redo the blood test as the nurse had said it might be a "lab error". So, I'm hoping for a blood test and a consult on Thursday.

I appreciate all your help!

Last edited by lolo3132; 03-16-2010 at 09:40 AM. Reason: additional info

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