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I could have a vitamin deficiency, but I've had two thyroid tests and it's definitely all right. My three panels over the past year were all over five pages of results, so anything I'm truly not sure what hasn't been tested. I will ask though for sure!

It's very frustrating since nothing about my case is obvious. I do meet the criteria for undifferentiated connective tissue disease, but I don't know that my problem is autoimmune. Then again, I don't that it isn't.

Since I'm 50, I've read a lot about late onset lupus. The symptom profile is a bit different. Lower ANA and dsDNA antibody values. More muscle pain than other SLE sufferers. High incidence of heart, lung and vascular problems. Very low incidence of kidney involvement. And photosensitivity is very uncommon. That lines up very closely with what I'm experiencing. Also disease progression tends to be slow and insidious making it take even longer to diagnose that younger SLE sufferers.

from winter of 2013 to now my dsDNA antibodies have gone from 32 IU/mL to 42 IU/mL. Since anything over 10 is positive I am certain that it is a clinically significant result, I'm just not sure what it's significant of.

And in the sad but true files. My dad (stepdad) has sjogren's and he's being treated by his PCP since no rheumi's will see new Medicare patients up here.
Theres no great consensus for dsdna unfortunately, and it has to be taken in context of symptoms. I had first "rheum"(in training) my 2 positve dsdna tests (18 & 15, >10 IU/ml positive, by muliplex) were false positives. My second rheumatologist with MANY years experience in private practice & clinical trials ran it a third time and said "you're positive for lupus" when I questioned whether my results were high or low he said "positive is positive.. doesnt matter how high". Makes it very tough for someone in limbo with all the dsdna confusions... It can be positive it other conditions, including mono, but usually low - my limited understanding would be more like my dsdna range than yours. The good news is late onset lupus, if thats what it is, tends not to be as serious as the hormones have already levelled out.
I had a very good visit with my PCP. Heís concerned about my depression, but I really and truly think Iím depressed because I donít have any energy. Since I took a vacation to explore places to retire last month, not normal behavior for patients with major depression, he put depression simmering on a side burner.

Tomorrow Iíll go in for an abdominal ultrasound. If itís clean, Iíll start a trial run of methylprednisolone that afternoon. If the steroids make me feel healthier, I can be referred to a rheumatologist out of state for case management. Before he can refer me though he wants me to head to a psychiatrist to rule out depression. Fine by me. I am very depressed about the impact being ill is having on my life; my life is pretty dang awesome otherwise. And venting my frustrations to get a grip on that snarled mess wonít be a bad thing at all.

My PCP does have a solid understanding of major autoimmune diseases, He knows how they can creep on slowly and take years for diagnose. And he understands the presentation of late onset lupus. He is definitely concerned about the gradual rise in dsDNA antibodies that Iíve had over the past year. (From 28 IU/mL to 42 IU/mL ref range >10 IU/mL is positive.) He translated why the rheumi gave me the opinion that he did which helped tremendously,

I am very, very optimistic. No answers yet, but the full spa treatment to move forward.





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