Help with understanding test results

Posted by rebaba @rebaba, Jun 3 11:19pm

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

What triggered the tests? I mean if you don't have any joint symptoms, what is the chief complaint that took you to a rheumatologist?

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I've had fatigue for maybe 10 years now and went to a prim care doc thinking maybe my Vit B12 was low. It wasn't. I have had to work real hard to accomplish doing things for a long time now-and it's just discouraging.
I have a history of sporadic severe nasal allergies, starting as a young woman when I was labeled disabled from allergies 50 years ago and have had several surgeries to remove nasal polyps. That was my only medical issue until the last 10 years or so. I began having breathing problems couple years ago, my eosinophils were skyrocketed, was told I had "like" overreactive immune system and prescribed Breo inhaler. When my breathing problems went away I eventually stopped the inhaler and breathed perfectly for the past year-until just recently when the breathing problems returned (lots of mucus in lungs). (something that comes and goes???) And my sinus is now flared also.
Additionally, I have redness on my cheeks and itchy rash on my back. I've always been light sensitive but only during the solstices when the seasons change-but am not a witch. Snork! And I am having balance problems to boot (but only with movement) it seems.
The 10 year fatigue is the only constant. Strangely enough, my severe allergies flared up as a young woman and now 50 years later. And the breathing problems, which come and go are a newer problem. I have no muscular or joint issues so it seems I should be seeing an immunologist-but I don't believe they do autoimmune diseases. In any case, I agreed to travel (just a bit) in order to get a sooner appoint (next week) with the rheumatologist. Yay! The prim care doc says that rheumatologists do it all. I went back and reread the notes from the prim care doc visit and he had added a dx of chronic fatigue syndrome. I guess I am feeling really anxious because of the bad sinus and lung flare up I am experiencing (once again) now and fear ending up in the ER if I can't get it under control. I have started the Breo daily (as in the past) and also ibuprofen which helps me a lot with the inflammation. The lack of answers and understanding of my symptoms by the docs doesn't help and leaves me feeling like an anomaly with no help available for me. Phew! So I guess I've had strange and severe allergic reactions from an early age which went away for most of my life, but returned with a vengeance in my old age. (maybe)

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Well it is certainly true that Rheumy(s) understand more about how the components of the immune system fit together than almost any other specialty.

Wishing you only good luck!!

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@rebaba

I've had fatigue for maybe 10 years now and went to a prim care doc thinking maybe my Vit B12 was low. It wasn't. I have had to work real hard to accomplish doing things for a long time now-and it's just discouraging.
I have a history of sporadic severe nasal allergies, starting as a young woman when I was labeled disabled from allergies 50 years ago and have had several surgeries to remove nasal polyps. That was my only medical issue until the last 10 years or so. I began having breathing problems couple years ago, my eosinophils were skyrocketed, was told I had "like" overreactive immune system and prescribed Breo inhaler. When my breathing problems went away I eventually stopped the inhaler and breathed perfectly for the past year-until just recently when the breathing problems returned (lots of mucus in lungs). (something that comes and goes???) And my sinus is now flared also.
Additionally, I have redness on my cheeks and itchy rash on my back. I've always been light sensitive but only during the solstices when the seasons change-but am not a witch. Snork! And I am having balance problems to boot (but only with movement) it seems.
The 10 year fatigue is the only constant. Strangely enough, my severe allergies flared up as a young woman and now 50 years later. And the breathing problems, which come and go are a newer problem. I have no muscular or joint issues so it seems I should be seeing an immunologist-but I don't believe they do autoimmune diseases. In any case, I agreed to travel (just a bit) in order to get a sooner appoint (next week) with the rheumatologist. Yay! The prim care doc says that rheumatologists do it all. I went back and reread the notes from the prim care doc visit and he had added a dx of chronic fatigue syndrome. I guess I am feeling really anxious because of the bad sinus and lung flare up I am experiencing (once again) now and fear ending up in the ER if I can't get it under control. I have started the Breo daily (as in the past) and also ibuprofen which helps me a lot with the inflammation. The lack of answers and understanding of my symptoms by the docs doesn't help and leaves me feeling like an anomaly with no help available for me. Phew! So I guess I've had strange and severe allergic reactions from an early age which went away for most of my life, but returned with a vengeance in my old age. (maybe)

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@rebaba Welcome to Mayo Clinic Connect! I hope you’ll learn something from other members! Actually, @pb50 is great and it’s wonderful that she got you started. We’re not able to interpret your lab values so we’ll wait to see what the doctor says. Unfortunately, The incidence of autoimmmune diseases have skyrocketed the the last few years and doctors are racing to catch up. This article from the Autoimmune Assoc might help you in collecting your thoughts before your appointment. https://autoimmune.org/resource-center/diagnosis-tips/
I look forward to hearing about your visit next week!

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Hello @rebaba, I would like to add my welcome to Connect along with @pb50, @becsbuddy and others. You mentioned you were wondering about the likelihood of having Mixed Connective Tissue Disease. I'm wondering if you might want to scan through the following discussions where other members with similar symptoms have shared their experiences.
--- Process for getting Mixed Connective Tissue Disease diagnosis: https://connect.mayoclinic.org/discussion/mixed-connective-tissue-disease-maybe/.

I know it must be worrisome waiting for your appointment with the rheumatologist. Can you provide an update after your appointment?

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@pb50, @becsbuddy, @johnbishop I appreciate your warm welcome and replies, am reading the links and will let you know the outcome. I have been struggling to identify the most "appropriate" doctor for my symptoms. (The situation is further stymied since my usual prim care doc is on a leave of absence.) Anyways, I like the link that suggested identifying the most concerning symptom and seeking an appointment for that illness at a large hospital or center to start with. I feel the pressure to "get it right" and am going to relax for a while (maybe) and consider going to John Hopkins instead. thanks

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I maintain that a Rheumatologist is accustomed to taking a broad perspective in diagnosis.

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@rebaba

I've had fatigue for maybe 10 years now and went to a prim care doc thinking maybe my Vit B12 was low. It wasn't. I have had to work real hard to accomplish doing things for a long time now-and it's just discouraging.
I have a history of sporadic severe nasal allergies, starting as a young woman when I was labeled disabled from allergies 50 years ago and have had several surgeries to remove nasal polyps. That was my only medical issue until the last 10 years or so. I began having breathing problems couple years ago, my eosinophils were skyrocketed, was told I had "like" overreactive immune system and prescribed Breo inhaler. When my breathing problems went away I eventually stopped the inhaler and breathed perfectly for the past year-until just recently when the breathing problems returned (lots of mucus in lungs). (something that comes and goes???) And my sinus is now flared also.
Additionally, I have redness on my cheeks and itchy rash on my back. I've always been light sensitive but only during the solstices when the seasons change-but am not a witch. Snork! And I am having balance problems to boot (but only with movement) it seems.
The 10 year fatigue is the only constant. Strangely enough, my severe allergies flared up as a young woman and now 50 years later. And the breathing problems, which come and go are a newer problem. I have no muscular or joint issues so it seems I should be seeing an immunologist-but I don't believe they do autoimmune diseases. In any case, I agreed to travel (just a bit) in order to get a sooner appoint (next week) with the rheumatologist. Yay! The prim care doc says that rheumatologists do it all. I went back and reread the notes from the prim care doc visit and he had added a dx of chronic fatigue syndrome. I guess I am feeling really anxious because of the bad sinus and lung flare up I am experiencing (once again) now and fear ending up in the ER if I can't get it under control. I have started the Breo daily (as in the past) and also ibuprofen which helps me a lot with the inflammation. The lack of answers and understanding of my symptoms by the docs doesn't help and leaves me feeling like an anomaly with no help available for me. Phew! So I guess I've had strange and severe allergic reactions from an early age which went away for most of my life, but returned with a vengeance in my old age. (maybe)

Jump to this post

i will be very interested to hear how your appt goes with the rheumatologist. i went to one once and she asked me why i was there. I have an allergist/immunologist and a pulmonologist who treats my asthma—with Breo. When i develop rashes, i see a dermatologist. I have rare and less than occasional autoimmune conditions (eg losing vision including sudden color blindness and lack of depth and at times anaphylactic reactions. for years i took allergy shots

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@rebaba you asked this: " 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?"

I looked it up to double check and it would seem the answer is no. The note at the bottom of your report means that 95% of people with Mixed Connective Tissue Disease will test positive for the ENA RNP ab. It does not mean that you are 95% likely to have it. It is confusing and not well worded and I have looked that up for myself in the past!

My cousin has frequent sinus and ear infections and part of her immune system is deficient (IgA?). She has IVG treatments. Not sure if she sees an immunologist.

Glad you are going to see a rheumatologist sooner. Let us know what happens!

I have a systemic lupus diagnosis and get really sick in the sun. I have high antibodies for scleroderma but don't have typical symptoms. We need to be followed, probably twice a year, but these diagnoses seem to have a wide range of severity. Hope you get some help!

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