Help with understanding test results

@elisabeth007 Yeah, it is hard. I hope to not have to do the "tear" thing but may have to, before it's over. (except my eyes don't produce tears easily-another symptom Yikes!) Some of my symptoms do have explanations that are psychiatric in nature. Sensitivity to summer heat is one. In my opinion, that Dx just doesn't "fit" my facts though. But that leaves me feeling (extra) vulnerable in the doc office. I am wondering how many patients with "odd" symptoms are given psychiatric dx's still today.

My rheumatologist told me I have “super sensitive syndrome” which is a medical way of saying “nothing concrete shows up on the $5,000 worth of blood tests he did! He is a wonderful rheumatologist, but all of my tests show the same diagnoses they always show, autoimmune issues. It’s a confusing mess of symptoms, and I’ve been living with them for sixty years.

@reets70 I (and others) viewed my recent test results as a possible explanation for the symptoms I've had (some) for nearly 60 years. I am beginning to believe that is likely to be "magical thinking" on my part and probably need to narrow my expectations. A few years back I decided that my ability to sleep was paramount and decided to get that one symptom solved and did!! I had to "kiss a few toads" along the way, but finally found an ENT who was willing to help me, instead of stringing me along with too much prednisone and years of unhelpful appointments. I need to do the same now and decide the next "most important" symptom to tackle.

I tire quickly with docs who are quick to hand out pharmaceuticals, in lieu of answers.

@rebaba I have found there really are no answers. Tackling each symptom one at a time seems very wise to me, as possible.

In many cases I (and at least one of my doctors) ask what I would do differently with a certain diagnosis, certain imaging etc. and if the answer is nothing different, we don't pursue!

Rheumatology is so murky, the diagnoses are blurred and elusive. I find the most helpful thing of all is a doctor who understands and cares.

@becsbuddy I saw a Rheumatologist today and she said that my ENA RNP test result of 1.9 is not significant enough to dx anything and that a titer above 8.0 is needed. She also dismissed my physical symptoms as something other than auto immune disorder related (my facial rash looks more like rosacea to her, instead of the hallmark lupus "butterfly"). She did agree to get a titer and pattern on another ANA test (for thoroughness)-but I am wondering why bother, since the ANA results seem even more arbitrary than the ENA. And she also ordered other tests as well, also for thoroughness only. I would like to get these other tests; but not certain I wish to continue seeing her. The advice she offered me is "stuff" I could get from a friend (without medical training). Hmmmm...I am wondering why the lab reports 1.9 as high and her high is 8.0 or higher. Makes no sense to me.

@rebaba it is hard to get a diagnosis. I hope you are followed annually.

What would a diagnosis do for you? Would you take Plaquenil or an immune suppressant or steroids?

I think you might get better help from a functional medicine or integrative medicine doctor. Do you have access to one and/or have you tried that route?

@windyshores Well, I already know that I don't wish to take prednisone ever again, unless and until, in dire need, and then only begrudgingly (real bad experiences with that). I would consider an immune suppressant though -especially, if my lung problems are related to auto immune. The Rheumatologist I saw thinks that since I have no muscle/joint issue, there is no need for me to see a Rheumatologist for auto immune "anything", in the first place. (back to square one) And while she was available soonest, she practices with the one medical "system" that I dislike.

There is a rheumy near me that is hard to get an appointment with but appears to take a "holistic" approach to treatment-his patient intake forms are like 8 pages long. That is who I really would like to see. I will have to check if Medicare pays for a second opinion. Otherwise, I plan to begin seeing an Allergist/Immunologist in my ENT's office (in a medical system I do like). And she may be able to recommend a pulmonologist for me as well. So, this time I was able to avert a breathing crisis on my own-thankfully- but need medical help planning how to avoid that in the future-whether or not there are answers to the RNP anomaly.

I'm still thinking over the additional tests this Rheumy ordered for "thoroughness": sed rate, C reactive protein, protein electrophoresis, creatine kinase, and the ANA (this time with titer and pattern). I am wondering if the test results differ according to whether I am "flared" at the time of testing or not. By pure serendipity, the first pos ANA and high ENA tests were taken days before a major "flare up" blew up. Since starting the Breo (steroid) (my facial rash is now gone for the first time) and I'm wondering if any further testing is even valid since starting the Breo. I just don't know. Sure would be nice to find a doc who knows these things!

What kind of lung issues are you having?

Hope you can see the more "holistic" rheumy even if there is a wait.

@windyshores I'm having a hard time determining what kind of lung issues I have, because I am a former smoker and was once "written off" as having COPD by my PCP (without any testing whatsoever) and later discovered it was nasal polyps that were obstructing my breathing (not COPD). A few years ago, I eventually took myself to a pulmonologist because I wanted to be certain to get the correct meds. She did lung function and blood tests and said I had mild breathing problems, with "overreactive immune system response "like" problems, raging allergies and changed my meds. I guess I now have more correct meds, but still have the original Dx of COPD in my file. I swear I heard the Rheumatologist I saw yesterday, make a derogatory remark under her breathe, when asking about my smoking history. I have found most docs to be supportive and encouraging about my having kicked the habit-although there are some who clearly aren't. Ugh! It happens. So, I will try my best to focus on how to get what I need and seek out the docs who ARE compassionate and helpful- instead of judgmental and unhelpful.
I reread your post about having eosinophilic problems with the esophagus. I have chronically high eosinophils also and off the charts Ige, but no difficulty swallowing. Anytime I have asked docs about this it is dismissed as being "just allergies related" meanwhile, I was given disability "status" in college due to my nasal allergies. May I ask what type of doc you saw about for your eosinophil problem?