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The long road of diagnosis...to be or not to be
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Date Joined May 2017
Total Posts : 3
Posted 5/25/2017 8:30 PM (GMT -6)
I'm reaching out for support as I really feel I don't know where to turn. I've been officially diagnosed with fibro and Gilbert syndrome. I've been to rheumy x2 and had 2 borderline positive ANA 1:80, the last one they didn't test for specific antibodies but I had low positive double stranded DNA and negative Ssa and Ssb previously. But as of late my symptoms are this- overwhelming fatigue, joint and muscle pain, GERD with difficulty swallowing solids lately, a tingling/buzzing feeling mainly in legs and feet, dry eyes ( eye doc did test and found dry irritated cornea) dry mouth but no salivary gland swelling, dry skin. My eyes suddenly felt gritty one weekend over a year ago and now it's all the time. Even my vision gets blurry with it. Bouts of sinusitis and vertigo. All of this in the past year. I even saw a neuro who did EMG and NcV test all negative which of course is good, but then he said " I hope that is a relief". I said " of course" I really don't want to be sick, I want to be out living my life, but whatever this is has robbed me of the quality of my life. It's getting worse and I have less time where I feel good. just wondering if anyone else had trouble getting diagnosis or had only low positive AnA?? Thank you for reading.
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Date Joined May 2005
Total Posts : 7445
Posted 5/26/2017 10:16 AM (GMT -6)
Sorry you haven't been able to get a diagnosis - sounds like you haven't been given any treatment, either? Sometimes with this many symptoms they will treat you even without diagnosis just to see if it helps. If you feel comfortable with your rheumy, you might want to suggest that.
Or find another rheumy for a second opinion - one thing that is sometimes helpful is to check with the Lupus Org at
to find your local chapter of the organization. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus (and other auto-immune diseases) in your area.
Meanwhile, Biotene has a line of products for dry mouth. You can use
eye drops (NOT medicated, no preservatives) to help ease the scratchiness. Tears Natural II is one product that comes to mind.
It's also helpful to eat well (no huge sugar or carb binges), get mild exercise, and get restful sleep. Sometimes we don't realize how poorly we are doing these things until we take a close look at our lives.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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Date Joined Feb 2009
Total Posts : 1875
Posted 5/31/2017 12:13 PM (GMT -6)
Sorry you've been feeling poorly.
My story: I've had some health issues for several years now, including a Sjogrens diagnosis two years ago from a positive lip biopsy. I had a weakly positive ana 1:160, sed rate of 32, and many of the same symptoms you are describing. It took years to get a diagnosis, probably 6 from start to finish. Things that helped me were Maxi Tears fish oil supplements. I got them online. I personally got a lot of relief going gluten free (for the most part). I do cheat occasionally and am not real obesssive about
it. If I want a
cookie once a week, I eat one! The gluten free diet and Maxi Tears helped me more than the darn plaquenil, which I have since quit. Do you have restrictions on foods or medicines because of your Gilbert's syndrome? Always check with your doctor before you take any supplements, of course.
Get good rest, reduce stress any way you can and stay hydrated by drinking at least 8 glasses of water a day as well.
I hope you can get some answers and relief soon. Auto immune problems can be a real pain.
Sjogrens syndrome 2/15 via lip biopsy: Seronegative RA , fibromyalgia
colitis-resection 11/10, hashimoto's thyroiditis, morphea, GERD
Meds: plaquenil, synthroid, Januvia, nexium, restasis, estrogen patch, prometrium, VSL #3, evening primrose oil, Omega 3 supplement-Maxi Tears.
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