I have dry eyes, mouth, nose ect. I also have extreme fatigue, confusion, memory problems, and feelings of numbness and tingling in hands. Sjogren's fits but my blood tests don't support? Any suggestions or others ideas?
Yes, there is such a thing as sero-negative Sjogren's, meaning it doesn't show up in blood tests. Have you seen a rheumatologist?
There are other tests, like a Shirmer's test, where they put thin slivers of a special paper in your eyes; it measures how dry your eyes are. A rheumatologist will look in your mouth and see if it looks dry, if you have sores in your mouth, etc.
If signs and symptoms point to Sjogren's despite being sero-negative, supposedly the gold-standard test is a lip biopsy, which will show pretty clearly if your white cells are attacking your moisture-producing glands.
When I went to my rheumy, I'd been taking Flax Seed Oil capsules under my neuro-ophthalmologist's advice, and my eyes weren't as dry, I had moisture pooling in my mouth, so he ruled out Sjogren's.
If you haven't seen a good rheumatologist, make an appointment. You will feel a lot better when you have more answers, and start treating symptoms.
I have had CFIDS since 1989. Then I got asthma, low thyroid, low blood pressure, carpal and ulnar tunnel, etc etc. Then I got Fibro a few years later. I was diagnosed with the Shrimer eye test 30 years ago and then 10 years ago by eye docs who just said to use over the counter drops. My mouth and nose are so dry, my bones are swollen. I have negative Sjogren's blood test. Looks like I have mumps--so painful. I have to wait to get into a program next month at the National Institutes of Health and have the works redone plus biopsies. They have new theory about CFIDS, Fibro, Sjogren's being autonomic nervous system disorder and are tilt tabling patients but I flunked that years ago at Hopkins and have been on meds for that for years. Rheumy diagnosed with Sjogrens but doesn't know if it's
"just the kind with dryness"--put me on evocax for mouth and restatis for eyes. Neither work. I do have high sed rate but have since I got CFIDS one day and never got better.
Do you have any info on the study, like a study number or website? I'm very interested in following their progress. I've had severe dysautonomia for years, constantly passing out, and was just recently diagnosed with neuropathy from Sjogren's. The Rheumy still wants to say I have fibromyalgia, and I know darn well that it's from the neuropathy. It would be so helpful if I could show him what the NIH is doing. I mean, why come up with an extraneous diagnosis when the symptoms are covered by neuropathy?
I was just diagnosed with Sjogrens. It was through a blood test. The dry eyes mostly at night I have. Fatigue I never had and if I did, I forgot because I do have brain fog - not to sound like a joke, its true. My slightly swollen saliva gland no one paid attention to, even though I brought it up just about every visit! It was hard for them to see, ever so slight, but it still was/is there and they admitted that, but they didn't think anything of it!
The tingling sensation that i have had for the last few years might not be sjogrens but the cryo or PN. So there are sometimes overlapping symptoms/syndromes or diseases. And I also think that sometimes doctors just get it in their head that nothing is wrong. I was told I was "over-thinking" things. Yet I was right more times than they and now they have to admit that.
I think its harder to get a doctor to listen to you if you look healthy. Totally aggravates me and I swear I feel like dragging my left foot behind me as I walk just to make myself look sick sometimes.
I don't know anything about Sjogrens since this is all new to me, but of course I want to learn more and especially in how if affects the white cells, so I will be keeping my eye on this forum so that I can learn about it.
So, sorry I don't have any information to offer except to say my diagnoses came through a blood test.
Orthodox MD's are useless imo. They have no arsenal vs. autoimmune, besides steroids that will kill you in the end. If they don't see it on some chart, you are "just fine". Go the holistic path, many cure themselves that way. It's a puzzle, but doable. Feed the body what is is lacking, take away what it doesn't need (or like), and it should solve itself in the end. After all, no drug cures anything, only the body does.
I agree totally. "Useless" does describe most of them. They know nothing about helping the body to help itself. They don't want to know either. They are making money hand over fist the way things are.
Oh, I do have a Holistic Internist and I have to catch up with him and go over some stuff. Yeah, forget steroids. I don't want to take them. Steroids scare me. But I will see a Rheumy to see what he says about the Sjogrens and then I will hand him some info on low dose Naltrexone. I doubt he'll want to listen, but that won't stop me from telling him.
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