Neg blood test, but so many symptoms
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I am 39 years old & having increasing symptoms. 8 yrs ago my ophthalmologist performed a Schirmer's test & ordered gel drops for malfunctioning tear ducts. Four years ago, I started experiencing cotton mouth & random chipmunk cheek on one side. My dentist suspected SS. Now I am having severe joint pain, joint swelling, skin rashes, dry skin, & stiff joints/muscles. My primary care physician said I do not have SS because my blood test was negative. My ENT said she doesn't know what is causing my parotid glands & lymph nodes to swell. I am distraught. I have always been healthy & all of a sudden, I feel like I am falling to pieces. I do not take any meds. I rarely visited my doctor until these last few months, and now she looks upon me like I am hypercondriac. She said she sees no reason for my complaints. I’ve read that 40% of SS patients have neg blood tests in the beginning. Anyone have similar experiences?
0 likes, 28 replies
morganacorrales
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barbara98940 morganacorrales
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Do get hold of an Amsler Grid and check daily that straight lines aren't becoming wavy, as one of the side effects of this drug is damage to the macular at the back of the eye. I have macular degeneration and my rheumatologist retracted their advice for me to take hydroxychloroquine. Do remember not everyone gets the side effects from a drug, so you might be fine. I just wanted you to be aware so you could catch it early if you did get it.you would have to act fast if the lines became wavy and see an optican.
morganacorrales barbara98940
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barbara98940 morganacorrales
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An amsler grid is a grid of black lines on white paper (or white lines on black paper) with a black spot in the middle. You cover one eye and use the other eye to look at the black spot in the middle. If any of the lines are wavy, or if there are parts of a line missing, you need to see an optician or go to an eye hospital accident and emergency
There are two types of macular degeneration, 'wet' and 'dry'. 'In wet AMD abnormal blood vessels grow into the macula and leak blood or fluid which leads to scarring of the macula and rapid loss of central vision. Wet AMD can develop very suddenly. It can now be treated if caught quickly. Fast referral to a hospital specialist is essential." (Quote from the macular society website'.)
Current UK NICE guidelunes are that injections to trwat wet AMD should be started within 2 weeks. Any damage done can't currently be repaired.
As I said before, you might not get this side effect, but it's best to be fore-warned and have a plan in place in case it happens.
morganacorrales barbara98940
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lily65668 barbara98940
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However, macular degeneration is one of the (many) age-related health threats that hang around in the back of my mind now, as I move on through my 70s. I have no family history of it, but neither did a friend who lost a lot of sight in quite a short period of time before she was diagnosed with the wet variety.
I confess I'd never heard of the Amsler grid before. I originally trained as a general nurse but I don't think we learned too much about eyes. I get an annual eye examination anyway, as my mother had glaucoma (which is strongly hereditary) but I immediately downloaded a grid on reading your post, and will now test myself every month - just in case! Oh, and the test was OK.
morganacorrales lily65668
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barbara98940 lily65668
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I would urge you to check more often than monthly - weekly at the most. Preferably daily. The reason is that the brain Is very clever and fills in the gaps of vision from one eye with what it sees in the other. Thus it is possible to be having sight problems and not know it!
I got age-related macular degeneration (AMD) when I was 45. I don't have any of the risk factors (apart from being a Caucasian female). There isn't any family history; I have never smoked; and my diet has always been excellent due to my wish not to put on too much weight. Researchers have recently identified there is a link between AMD and the immune system. The only thing I can think of as to why I have developed AMD, is that I have hashimotos hypothyroidism, which is an autoimmune disease. So we all need to vigilant - wet AMD can make one go blind in a matter of weeks! Hence my suggestion to check daily.
lily65668 barbara98940
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I'll certainly take your advice and check my performance on the grid once or twice a week!