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?
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jeanne-mar82023 morganacorrales
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dryguy morganacorrales
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lily65668 morganacorrales
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However... this doesn't actually make a lot of difference. There's no specific treatment for Sjogren's anyway so having a diagnosis is neither here nor there. Only the symptoms can be treated. Of course it helps if you can find a doctor who can see the bigger picture, but I'm afraid they're like hen's teeth, so it usually works better if you can learn to manage your own condition. (I speak as a former SRN - old UK qualification pre-RGN.) The important thing is to get your GP, dentist, rheumatologist, ophthalmologist, whatever, to take your individual symptoms seriously.
It's also important to try not to let your symptoms get you down. Sjogrens, like all auto-immune conditions, is very prone to flare-ups and remissions so you won't always be feeling the way you are now. As Dr. Guy says, do your own research. You may well find that life-style changes can help significantly. There are all kinds of diet suggestions on these boards, ranging from paleo to vegan, the moral of which is - find out by trial and error what works for you.
One thing is a constant, though. With your history of salivary gland problems you should see your dentist at least once every six months and avoid sugar like the plague. That's sugar in all its forms, not just the stuff in Coke or cookies. Though one or maximum two small portions of whole fruit a day are beneficial, steer clear of smoothies and juices - especially the commercial ones that are loaded with sugar (not to mention other additives). However, the home-made ones aren't a lot safer, as you can consume a lot more natural fruit sugars in a drink than you could if you had to eat the whole fruit. And don't get taken in by marketing. In my neck of the woods they've actually introduced a new fruit drink under the brand name of "Innocent". It comes in small glass bottles each with a terminally cute little knitted bobble-hat on top... at an exorbitant price needless to say. I wouldn't touch the stuff with a barge pole!
Water is the best drink for those of us with dry mouths, but not too much at any one time, as this tends to wash away the little saliva we do have. And saliva's not just water, it contains all kinds of useful chemicals. It's best to keep a bottle beside you at all times and take small sips at frequent intervals. But please keep up the pressure on your dentist and doctors over the salivary gland problem. Some people form stones in their salivary glands that cause a blockage and need to be surgically removed.
morganacorrales
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I do realize that SS is incurable, however it is still vital for me to be diagnosed or have it ruled out in case I have something else. Either way, I would very much like to know and to have a doctor take my ailments serious. Things like dry tear ducts & salivary glands, swollen joints, & chipmunk cheeks cannot be faked, and I do not like to be treated like I am a hypercondriac.
Thank you all again for the replies.
lily65668 morganacorrales
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morganacorrales lily65668
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lily65668 morganacorrales
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morganacorrales lily65668
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dryguy morganacorrales
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morganacorrales dryguy
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aitarg35939 morganacorrales
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Sounds like you're got several admin problems compounding the physiological ones: sucky GP (same term US as UK) and one of our stateside sucky insurance programs which slow down spending by making people wait months to years to see either specialists or a new gp. Makes me feel lucky all over again in the ENT who diagnosed me. Didn't have a gp back then so his word was law. Still, later on when I had so much pain under my tongue , he was clueless. Then he was out one day and I saw someone wet behind the ears who said I had stones in my sub-lingual. AND I DIDN.T NEED SURGERY FIRST: He said let's try a long course of low dose antibiotics.
I did that and kept reporting no luck. Then I kept feeling an occasional piece of grit in my mouth, almost always a bit after evening meals. Took me a while to figure out that those pcs of grit were the stones.
Same guy I guess sent me over for tests on all salivary glands and I had one of those Ross Geller "Friends" moments not uncommon in this group: the specialist did all the tests then said I was very unusual, and would I mind if he brought in a few others because few docs ever got chance to do more than read about people from whom saliva couldn't be provoked. Next thing I know there are 30 docs (level 1 trauma center & low-income hospital) looking into my mouth. Finally after everything else and squeezing tons of lemon juice into my mouth, voila! One drip of saliva was provoked from the subliminal. The room cheered, I kid you not.
My parotids were dead and maybe submandibulars also, so I'm very glad to have avoided surgery on my sublinguals. I make adhesions on my insides like crazy wherever I've had surgery and I think those would've eventually ruined the sublinguals. (Yes there's a term for people like me lol)
We can't predict anything about you based on my case. But it is vital that you start treating your mouth as if you have SS, hence the suggestions by someone else here about drinking water and seeing dentist. But just as important are the toothpaste & mouthwash you use: get rid of ones with sucrose, any form of fructose, and alcohol. There are several brands that say they're for dry mouth but you still have to check ingredients, then try them out If it burns your gums, ditch it. Ditto for mouthwash. The goal is to get a clean mouth but do not rinse with water, use the mouthwash since it provides some of the protection others get from plentiful saliva. A good dry mouth paste does the same so if you can't afford both paste and wash ($$$), just use paste but don't rinse at all, eject the excess so to speak. I happen to use a brand with a light blue on white packaging design, name starts with a b and ends in ene, my then rheumo never told me this, found the brand on my own.
It's also important that you wait 20-30 mins after eating before you brush so that enamel can recover from acids in food (and most things we eat have acids which attack our teeth). Many of us rinse after eating, or floss and rinse, or chew a particular gum after eating. It's sold in most health food stores by the toothpaste, even at whole foods market. Think of a spry little old lady and you've found it, several flavors. This gum helps make up for our lack of saliva.
Many of us chew gum a lot. I'm 61 and wouldn't have survived from my mid 20s til now without billions of pieces of gum. As whole pieces of non-stop gum are so big they make my jaws hurt I mostly chew half pieces. This helps keep dry mouth at bay, and the terrible breath which can come from dry mouth.
So you probably already know all this, no offense intended. Take care of your mouth because you lack all the saliva called for in the master plan, lol.
morganacorrales aitarg35939
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aitarg35939 morganacorrales
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lily65668 morganacorrales
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My previous GP finally came around to the diagnosis of SS after a mere 10 years (which I realise is actually quite good) but after a house move two years ago, I now have another one to convince. This one says I definitely don't have SS as it's only an eye disease and if I'd had it for 20+ years I'd have corneal damage by now. He's sympathetic about the joint pains, tendinitis and myalgia which are making my life a misery in this current flare-up, and rightly says they're down to RA... for which he prescribes NSAIDs. (But don't worry - I smile sweetly then tear up the prescription once I get outside.) He says the intermittent Reynaud's syndrome, peripheral neuropathy, dry eyes and dry mouth are unrelated signs of old age. Sigh...
On the bright side, the new GP surprisingly turns out to be a keen proponent of "leaky gut" theory. Now I admit that my reaction to this idea has in the past been: "Yeah, right..." but he's actually convinced me. He recommended a powerful pre- and probiotic mixture recently arrived in Europe from the US, with which a colleague of his had done some informal trials with good results. At least he admits I do indeed have an auto-immune condition (RA) so he pushed me to start taking it. Although I had to stop the first trial due to the side-effects (violent exacerbation of symptoms, depression, mental confusion that had me thinking it was the onset of dementia etc.) I'm now several weeks into a return match with the stuff, and just starting to get good results.
The twin moral of this story is to: a) educate ourselves so we can manage our own symptoms; and b) try and find a doctor who is open to dialogue and new ideas, even if he/she has never heard of Sjogren's - and that happens too! I think we can do a lot to educate our doctors, providing we take a low-key, tactful approach.
lily65668 morganacorrales
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barbara98940 lily65668
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lily65668 barbara98940
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barbara98940 lily65668
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lily65668 barbara98940
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