I saw the rheumatologist today to ask him some questions and he gave me nothin. When I asked if I really have MCTD, he said quite indignantly, yes you do, handed me a piece of paper with ENA screen, anti-SSA, anti-RNP, it has some numbers, positive, positive, negative, told me I could have a copy and he escorted me to the front desk and he conveniently disappeared. I went a long ways in -30 degree weather to see him and he wouldn't even help me. I don't understand, I thought that was his job. All of this just reinforced my dislike for Drs.
How can I be negative and positive at the same time? What do these numbers mean? there is a H 367 and then <120. I'm hoping that someone else got results like this and can explain what the heck they mean. When I asked the Dr, about my stomach pain he said it is not the MCTD, or fibromyalgia. Then what the hell is it...I've been so upset, crying, confused and in sooo much pain all the time. Any tips would be greatly appreciated. Thanx in advance.
The test are so confusing and it doesn't help to have a doc who is too busy to care.
So ...most lab slips show a range after the type of test....a low and high for the normal person. and it depends on the way the that is done so you can't even compare numbers from different labs as some will use one method and another might use another method. So the low number might be a 0 and the high willb e something else. If you fall between the 2, you are in the "normal range" if you are out of that range, it will be marked as such.
The names of the various tests don't mean anything to us but if you want names, I can give them to you so you can do a search on them.
ENA is the antibody to Extractable Nuclear Antigen.
Anti-SSA is also known as anti-Ro. It is an anticytoplasmic antibody(as is La, Sm, RNP and Jo-1).
RNP stands for the RiboNucleoProtein antigen.
MCTD has high "titers"(numbers) of RNP in particular.
Hope this helps demystify a little bit for you.
hugs............Jenny(I have OA, RA and Sjogrens...I "get it"))
The Following 2 Users Say Thank You to jennybyc For This Useful Post: mybodiesgivenup (03-06-2011), vbmorra (10-01-2011)
What was high sweetheart, your RNP levels? In my test, it was 7.3 H (0.0-0.9 being normal). I know that is tested differently with different labs. I have been to a different lab here, always showed my RNP around the same. When you have MCTD, you will have high RNP, the other autoantibodies will likely be negative, like Dsdna, and such, for Lupus, and there are quite a few others like Jenny listed.
If you want a copy of your results, go to the front of the office and fill out a medical release form, they cannot stop you from getting your medical records.
Your doctors don't just usually hand you over a copy, you have to fill that form out. He should have explained that to you.
What's going on with your stomach? I have alot of GI issues. Maybe I can help. MCTD can attack your GI tract. But likely it's a problem of it's own, acid reflux, gastritis, IBS or IBD, something you need to see a gastroenterologist about. If it's been a long term issue, maybe you should ask your PCP for a referral.
The Following User Says Thank You to neveragain444 For This Useful Post: mybodiesgivenup (03-27-2011)
I'm guessing the way my numbers are so different than yours must be as you say, the way the test is done. My numbers are as follows: anti-SSA: H 147 numbers up to 120 acceptable. anti-RNP positive H 367 numbers up to 120 acceptable. anti Scl -70 is 24 up to 120 and Negative ENA screen:Positive (negative would've been the right answer) So these are my numbers and I can't get much out of the Rheumatologist. I have had heartburn, acid reflux, irritable bowel, fibromyalgia, ... and of course now this: MCTD, so, its not like I'm not used to pain, but the Raynaud's, that can bite me, cuz man it sucks! I have to wear mittens alot of the time and hoodies and even sometimes a hat - and that is IN the house! I wear a hoody over my pjs and a big pair of mittens to bed! My Dr. yesterday gave me an email address for a scleroderma support group here in my community - hopefully there I can understand more of what is goin on with me. In the meantime, these message boards have been very helpful!
I'm confused, your ENA was positive or negative? It actually should be positive. Makes more sense if it is. Your tests indicate autoantibodies caused by MCTD & Sjogren's. And you can rule out scleroderma since the anti Scl -70 was normal.