Help with understanding test results
Tested positive for ANA Direct and also high on ENA RNP Ab.
The bottom of test results show the Autoantibody Disease Association and Condition Frequency for
RNP Mixed Connective Tissue
Disease 95%
(U1 nRNP, SLE 30 - 50%
anti-ribonucleoprotein) Polymyositis and/or
Dermatomyositis 20%
Does this mean I am 95% likely to have Mixed Connective Tissue Disease? with a 30-50% likelihood of having Lupus and 20% for Polymyositis and/or Dermatomyositis? My first appoint with a Rheumatologist is 2 months away (I have no issues with joints or arthritis) Thanks deciphering the results if possible.
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@elisabeth007 No, but I will check into those.
@rebaba It does sound confusing, but most doctors and doctor practices want it this way. I just finished completing one for a visit on Friday. Also, I agree with @elisabeth007 when she suggests that you try to talk with either the office manager or a patient advocate in the hospital system. The basic issue is you want your problem diagnosed and treated.
Is there a real reason that makes you hesitant to complete the forms or just reluctance?
i remember years ago wanting to cancel a new patient appt because only 15 min was alloted. It turned out that was just a nonsensical way that system scheduled. i have found its best to not get overly concerned about bureaucratic red tape—it frequently isn’t what it appears. We also have the right to write up our on history “free form”
@elisabeth007 @becsbuddy My apologies, I am feeling pretty graceless at the moment and am floundering to cope with the "unexpected". I have an appoint with a Rheumy for this Friday and will go-if only to get an interpretation of the test results and expect she will want to run further tests and will post when I find out more.
@elisabeth007 Thanks for your continued support. I believe you are correct about the "red tape" and such. I think I am having mixed feelings about getting a Dx. It feels kinda' like a Pandora's Box, emotionally. I think my primary concern is whether my breathing problems are related to the MCTD (which can affect lungs) IF I do in fact have MCTD.
Your "free form" history suggestion is a good one and I've started a "free form" for my appoint this Friday. My plan is to get an interpretation of the test results and a Dx, get any additional testing that's needed, and check into the cause of my breathing problems if needed.
Somehow, I know the test result is not a "fluke", which is unsettling in itself.
cleveland clinic pulmonology has been amazingly helpful for me in finally diagnosing me with asthma in my 60’s. Every single spirometery test i have taken is normal but an infrequently used test diagnosed my asthma. Best wishes
No need to apologize, @rebaba. Of course you are nervous and want and need some answers. The rheumatologist may, or may not, be able to interpret the lab results, and may want more tests done. She is likely to base her diagnosis more on symptoms and your history. Just remember that autoimmune disorders are giant puzzles!
Be sure to go to the appointment relaxed and with an open mind. What do you think could be the worst thing that comes out of the appointment?
Good advice. Thanks @becsbuddy the logic behind the "worst case scenario" is a real good "tool" that I use often, but I struggle to apply it while in my "summertime hibernation" mode. I guess one "worst case" is that the Rheumy tells me that she has never heard of someone who has to hibernate during the summer. Apparently, I have both heat and light sensitivity. When the summer hits, I shut-down and hibernate and have since my youth. The light sensitivity only began since retirement and I have to wear sunglasses in the house to avoid glints of light from the windows or I get blind spots and migraines. It only happens certain times of the year though, I think according to the sun's angle. I have begun to read of other people with similar symptoms (maybe). I want to ask her, if that is what people mean by sensitive to sun. I guess her answer won't kill me, either way-but maybe an undiagnosed and untreated disease can.
Rebaba, None of my business but is your goal to feel better or to determine if you have a particular condition you read about?
When you say you know the test result is not a fluke, i don’t know what you are talking about and i don’t have medical diagnostic skills. However, i have had numerous abnormal test results that were normal when re-tested. it’s my belief, if we can strive to be as resilient and flexible, life tends to be easier. Wishing you all the best
one possible scenario is if she says she doesn’t know….is to ask her if she can refer you w someone who has the appropriate skill sets to figure it out. in tears, i did that once with an amazing outcome
All the best!