All the common signs of Sjogrens
Posted , 8 users are following.
So on a Decembers morning in 2017 I woke up to find a lump on my lower lips (I put this down to stress, as I’d been under extreme stress for several months). The lump was diagnosed as a mucocele, i also has a MRI scan to rule out any canceras I was worried about that.. MRI scan came back showing nothing which I wasn’t pleased about . However I’d started to get some gland pain under my chin on my right hand side . I pushed my Dr to send me to an ENT, they did a sialogram. The results showed I have a stone lodged in the gland which would explan the pain I’m getting. However I have other symptoms like thick, milky, sticky saliva and also general facial pain... I’m very worried that I’ve got Sojgens as everything seems to fit , I’m worried about how this will effect my quality of life as on 39... I don’t really know what to do next - be great to hear from others in the same boat right now...
0 likes, 20 replies
Tumtum1963 paul42034
Posted
I guess the thing to do would be to ask for blood testing and failing that, a lip biopsy. They may not be considering Sjögren’s as you’re a man. It is much easier knowing what you’re up against.
paul42034 Tumtum1963
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Tumtum1963 paul42034
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Paul we reach the stage where it’s just a relief to confirm you have Sjögren’s for certain. You clearly haven’t reached that point yet but I’m guessing you will. For a portion of sufferers it never progresses much beyond dryness so please don’t be scared.
diane03050 paul42034
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It is so funny you posted this now. I have had dry eyes nose mouth and ears. In December I has a rash on cheeks and felt pain from head to toe. Blood test all neg. In the beginning of February I woke up to left side of face swollen and parotid gland big. Test for mumps neg. ENT said ? Sjogren's all blood test neg. In beginning of March U/S of neg showed my 7nodules on thyroid which have been there for at least a yr tested benign last yr. ENT Dr sent me for CT Scan of neck neg. I started have a thick mucus develop after having dry mouth for so long. ENT Dr said over phone Thrush. She ordered rinse for mouth. I still have swelling on that side of face not gland salty taste and feels like swelling inside of mouth on the left. I also have pain in jaw on that side after I eat. Still don't know what it is I go to EVT this week If the tell me everything is neg again I have now idea.
diane03050 paul42034
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paul42034 diane03050
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diane03050 paul42034
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paul42034 diane03050
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diane03050 paul42034
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Nu2this diane03050
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A lip biopsy also is used to determine Sjogrens but there are different feelings regarding this tests. I myself have not requested it because I seem to be a slow healer and came up with connective tissue disease. Some people have no problem with it but others have issues healing. I hear it is the best and fastest way to confirm Sjogrens.
aitarg35939 paul42034
Posted
Hi Paul
As we say in another forum here on a different chronic issue, this is something that we live with rather than die from. Tho it is overwhelming to be faced with any diagnosis, we mostly adapt pretty well. If you've got dryness & thick mucus, start taking care of your mouth now with dry mouth products. Drink lots of water, lots and lots of water. Lily suggests little sips but I probably drink 4 oz at a time.
About those salivary stones: when I had them 20 yrs ago I was out on a very low dose antibiotic for a long time, either 3 wks or 3 months. At the end I told my ENT that it hadn't worked. Then I realized that i kept feeling pieces of grit in my mouth ,,, and those were the stones coming out! The pain went away.
Have they come up with some newer treatment?
All of you with thick mucus might ask your docs if mucus thinners might help. I use them for thick phlegm, non-SS lung disease. If the answer is yes, pm me & I'll tell you where to get them legally as cheap as they were in the '80s here in the States.
paul42034 aitarg35939
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aitarg35939 paul42034
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Were it me, I'd get a 2d opinion on that surgery idea. Ask both 1st & 2d about other options. If no one suggests anything, ask about the long low dose of antibiotics treatment.
This is scary and it's new. Your body has scads of glands scattered all around it for various functions. SS will not make them all fail. A stone in a salivary gland is not a failure of that gland. It's just a stone, and it's quite a small thing, physically.
You might also consider other treatments such as acupuncture. Really, tho, if there are ways to shrink kidney stones, your docs need to be more creative about salivary stones.
lily65668 aitarg35939
Posted
Aitarg, this talk of shrinking stones got me reminiscing. I'm wondering whether homeopathy could be useful in a case like this. And yes, I do know it's technically just water! And I'm not suggesting "alternative" medicines are the answer to all our health problems.
Years ago I worked with a woman who often had to take time off because of the pain of gallstones. She'd had all the diagnostic tests, which showed a couple of massive stones in her gallbladder. She was told surgery was the only option but had a phobia of hospitals. She opted for homeopathic treatment instead. After a year she was symptom-free and a repeat test showed a large number of tiny particles in her gallbladder. Her surgeon wanted to go ahead with the op anyway (well, he would, wouldn't he?) but she refused. I left that job another year or so down the road, so don't know the final outcome, but at that time she'd had no recurrence of the pain.
Obviously, gallstones have a completely different structure and origin from salivary gland stones (both of which in turn are different from kidney stones). However, I'd be inclined to give it a try if I ever developed stones anywhere in my body. That, and acupuncture, as you suggest.
I've never tried acupuncture but had my first personal experience of homeopathy at age 36. I got a sudden attack of unbearable pain in my right hip joint while out walking in the forest. Within two weeks the pain had spread to at least half the joints in my body, and I ended up having to take a couple of weeks off work. I could barely walk because of the pain in both hips and my right big toe joint, but my hands were the worst affected. Acutely tender nodules started appearing all over my finger joints and wrists. The first GP I saw didn't even order blood work, just tried to kid me the nodules were mosquito bites. When they were still there six weeks later he said he didn't know what they were!
An acquaintance sent me to her homeopathic rheumatologist, who found various inflammation markers in my blood. (In my country homeopaths, like acupuncturists, have to be fully-qualified doctors.) He put me on all kinds of potions, as well as giving me some good dietary advice - which might be what did the trick of course - and I was cured in about six months. That was nearly 40 years ago. I still tend to get joint pains during SS flare-ups but I clearly don't have RA.
Unfortunately the homeopathic rheumie retired more than 20 years ago, and I've never found another one as good as him. I'm now on the lookout for a homeopathic ophthalmologist!
aitarg35939 lily65668
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I've got not problem with homeopathy. I use drops for a number of nasty things in the air and the drips help me.
My best friend in life got gallstones & wouldn't even think of having her gallbladder removed. She lived in Montreal & would switch to the French gallbladder diet, avoid fatty beef/pork, and drink a little tansy tea. Apparently unlike my gallbladder, which died, hers us now perfectly healthy sans stones. Her English doc is astounded.
I think there are many ways to look at things but doctors often get stuck in the assumption that if something wasn't taught in their med school then it must be bunkum.
And I had acupuncture just this morning!