Ultrasound on salivary glands to check for Sjogren's

[meggiemog]

I am based in the UK - and have had a negative blood test for Sjogren's - but have been offered an ultrasound scan of my salivary glands. Just wondered if anyone has been diagnosed this way. I am extremely grateful I have been offered this as I know some people hit a brick wall when bloods come back negative. I have had a dry mouth for months now - with burning tongue and taste loss on a regular basis - to name but a few problems. My eyes are often dry - but my mouth and whole digestive tract are completely out of sync and my skin is so dry sometimes I could scratch it off.

[weathervane]

Hi meggiemog, i had a scan of my salivary gland as part of my assessment for Sjögrens, though my bloods were also positive for Sjögrens . I had facial swelling as my salivary gland was blocked due to damage . Another way of obtaining a diagnosis is by lip biopsy which i did not require.

It took me over 6 years to get a diagnosis when i was eventually referred to rheumatology. Best wishes, i hope some of the tests give you a result so you can get a diagnosis as well 🌸

[meggiemog in reply to weathervane]

Thanks Weathervane! Hoping so my mouth is as dry as a Pharoah's sock! I have way too many symptoms to ignore.

[weathervane in reply to meggiemog]

Try salivix pastilles or biotene saliva replacement gel , helps a bit at night .

[meggiemog in reply to weathervane]

Thanks for the advice. Right now I always have a bottle of water handy.

[Paprika60]

Hi, I too am based in UK and have been hitting a wall for over nearly two years. My vasculitis doctors have not been responsive at all. They just listen and say it often accompanies Lupus and Vasculitis. So recently I decided to take more proactive approach and asked my optician to write to my GP for a referral. No doubt it will take months to get the appointment. I feel I just have to start doing something about my dry eyes. I produce hardly any tear. Luckily so far my eyes are alright and but I don't want any permanent damage. I too drink lots of water (2 litres per day at least).

I have noticed without any certainty that I am less plagued by burning thirst if I eat less starch that day. So I am trying that route as well. Have you tried food trial? Ultimately anything and everything doctors can do for us is all based on chemical medicine. So if I can help natural way myself, I think it is the way for the long term. I have had so many side effects from medication over the years.

Good to hear that you have been offered blood test and other related tests. You are getting somewhere. Fingers crossed!

[meggiemog in reply to Paprika60]

Thanks Paprika60 - it's frustrating to say the least. My GP has been really helpful thankfully. As for food - I am on a strict diet due to stomach issues - which doesn't help matters. I try to stay away from tablets as much as I can. I keep getting all kinds of weird stuff happening - like random rashes and swollen glands one day and gone the next! Would love to know why.

[AnnaMaeCat in reply to meggiemog]

I am only starting on this journey (from Canada); I’m currently pursuing a diagnosis and seeing a Rheumatologist. Blood was negative but after I see a Respirologist I will probably opt for a lip Biopsy unfortunately just to try to prove my case. I believe I have some form of lung involvement that while last known can come along with Sjogren’s (if you dive into medical research). Covid hit a month after my symptoms started to ramp up for the first time. I was bubbled, working from home and homeschooling for months so I spent hours every morning and evening researching about my symptoms and treatments. I was worried about my difficulty breathing (and numerous other symptoms) and was unable to get into a specialist due to Covid. 3 things I researched made a huge difference for me and can bring my various dryness/joint/lung/other symptoms down significantly, almost completely: AIP or autoimmune protocol diet, intermittent fasting until lunch or early afternoon to allow my body to clear the inflammation and rebuild cells, as well as taking certain supplements that have been found to be low/helpful in people with autoimmune (fish oil, probiotics, high levels of vitamin D3, B12, calcium, zinc - looking for supplements that don’t have unfriendly fillers such as soy, dairy or wheat). After seven months I’ve been able to successfully re-introduce some foods with success but I steer very clear of dairy and gluten. When I experiment with dairy or gluten or too many of some of the other things that I have to be careful with on the AIP list, the symptoms come back within a couple of days and when I get strict again, they go away over the course of a couple of days. With lung involvement I had serious concerns my life was going to be significantly shortened and I now have hope that I have control to go on to live a normal, healthy life (in many ways healthier than I’ve ever been). It’s just my experience but I feel like it’s important to share with anyone else struggling with Sjogren symptoms in case it’s something they would like to explore. Best of luck.

[Paprika60 in reply to AnnaMaeCat]

A big thanks for sharing your story and your diet choice. I had tried a strict diet regime at one point for about 8 months 6 years ago (sort of Paleo but not so much meat) cutting out all dairy, sugar and gluten. It was really tough and choice over food was limited as gluten free things weren't so readily available and costly and my husband hated most of them. But disappointingly I didn't notice much difference after months. So I have come back to normal eating with emphasis on oily fish and various vegetables. But I am still careful. I do take supplements but with some caution as I had noticed stronger dosage of Vitamin D wasn't good for me either. Making right choice for vegetables can be a bit trying as all night shade vegetables are considered bad for inflammation and that takes many colourful vegetables off. Clearly your diet choice has worked for you and you are very fortunate! I am still searching for the right way and so far have managed to take most medications weaned off and now on Hydroxychloroquine once a day only. Fingers crossed. A bit nerve wrecking as the weather is getting colder and damper and that seems to worsen my Vasculitis and Sjogren. Once again thanks for sharing your experience!

[meggiemog in reply to Paprika60]

I definitely found gluten is a no-no for me . Not good with oats either - and in the last few months chicken and parsnips are off the menu too. I am almost finished reintroducing foods - and diary is not an issue - just as well as soya/ oat/ almond milk seem to all contain carrageenan which I think I am allergic to . Have had hives a few times with foods that were supposed to be good for me ..... one mans cure another mans poison!

[meggiemog in reply to AnnaMaeCat]

It's quite frustrating trying to get diagnosed. The last few years have been a blur of hospital appointments and different departments and trying to find something that might link everything together. Sjogren's could be it - I am currently under gastroenterology, audiology and rheumatology (when I get there) . If nothing found I am just falling apart like an old teddy bear

[Dynamic63 in reply to AnnaMaeCat]

I appear to have the same probs with wheat and dairy - every time I consume these my mouth becomes drier and my stomach looks like a beach whale not to mention the diarrhoea.....

[AnnaMaeCat in reply to Dynamic63]

It is amazing how once these symptoms start it seems like a switch has been flipped and certain foods just do not work for your body anymore. I’m somewhat grateful that it gives me an element of control over some of my symptoms and health at least for the time being - I don’t know what the future holds. Best of luck to you in your journey

[Kels1974]

Hi I'm undergoing tests for sjogren's, I'm also I the UK.In march I had blood tests,schirmers test and saliva test and I recieved a letter for ultrasound scan on parotid salivary glands but it keeps being rearranged because of covid.I still don't know the results of my bloods and other tests yet from March.

[meggiemog in reply to Kels1974]

Gosh - that's really frustrating Kels1974 - I think if you have a contact for the hospital department secretary- they may be able to get someone to give you the results so far. Either that or see if your GP has got anything back from them. During Covid our GPs have had a lot more support from our local hospital - I had a test done last week (endoscopy) and they had results back within a week even though I am still under gastroenterology. Obviously he couldn't tell me what they will do - but he gave me a good idea - which was reassuring. Time scales are all out the window! I am not expecting to hear from rheumatology anytime soon though - this is not something serious such as cancer . They do seem to be getting people through the door now for essential tests. I hope you can find something out soon.

[CarlaEP]

Hi

Just wondering if a trip to the Opticians, like I found, who confirmed dry eyes and wrote to my GP to put me on Viscotears would support a diagnosis for you and help with these horrid symptoms. I am waiting for a GP referral and misdiagnosed with Fibromyalgia 6 years ago I think 🤔 😔Good luck

[meggiemog in reply to CarlaEP]

Thanks CarlaEP - not sure when I am due my next eye test - they usually ask me if I work on a computer screen and leave it at that. My eyes are dry - but it's my mouth that gives me the most trouble. My eyes just feel a bit dry - sometimes I get random bloodshot eyes or they feel gooey. I did have to stop wearing contact lenses as they used to dry up and roll up in my eye - not the best. My GP did put in the eye dye when he examined me - he said my eyes weren't too bad - but he could see that my mouth and tongue were very dry. It tends to be that and my important little places that are like a desert on a regular basis. I hoped that the blood test would show something - but hey-ho not that straightforward in my world!

[ROXY6767]

That's an interesting one, I've never heard of such a diagnostic exam. The only thing I can offer in this regard is that when I was starting to suffer really badly with lupus and sjogrens in my early twenties common 31 years ago ( I had no idea what it was at the time, not until later), I had an emergency issue arise with a salivary gland under my tongue. I had already been diagnosed with what they termed dry eye syndrome at the time, and they had done a laser punctual occlusion to close the tear drains in my eyes. This only helped to a degree. Anyways, I noticed there was a swelling underneath my tongue. It got bigger and bigger, until it was the size of a grape. So I went to the doctor, and they said that I had a granular obstruction, a sub lingual granular obstruction of the saliva gland. Basically, something had blocked the gland from letting out the saliva, partially because I just didn't make enough saliva, I guess. The saliva gland was getting more and more full and so they took me in to The Doctor's office to tried to get out the obstruction with some type of small wire. They tried to feed it into the outlet for the gland but it didn't work. So the next thing I know, he takes a scalpel and just slices out the whole gland from underneath my tongue. Then he cauterized the wound and sent me back to work. I was working a switchboard at the time so that was pretty can inconvenient. I couldn't move my tongue and I couldn't barely speak or eat. I felt like I went in completely unaware that I would come back out butchered and missing part of my body. That was how I felt at the time, a bit in shock. Eventually it healed, but when he cut it out, it took away the piece of skin that keeps your tongue from sticking out too far, so then I could do the cool trick where you can stick out your tongue really far and touch your nose. So at least I got something out of the deal, lol.

Have you tried any of the biotene products for the dry mouth? Also, it helps to drink water with a proper ph level.

[meggiemog in reply to ROXY6767]

Hi Roxy6767,

That sounds pretty painful! I am fairly sure the ultrasound will be painless - if a bit gooey! No news yet - but things are slow due to covid-19 taking most of the appointments away. I'm not sure if my salivary glands under my tongue can be seen so well as I have mandibular tori - (boney growths) on my bottom jaw. When I was younger I thought everyone had them! Anyhow will have to be a patient patient and wait till things have died down ( literally).

[ATVMWF in reply to ROXY6767]

Hi Roxy6767,

I have included a link to a research paper from 2007 which suggests that scanning may be useful in diagnosing and monitoring progression of SS. It was used by my medical professionals (UK), along with blood tests and Schirmers test to confirm that I had SS in March 2020, although I am still waiting for my appointment with a rheumatology consultant because of the Covid-19 issues.

openaccessjournals.com/arti...

[Moon_maiden]

Hi, if you don’t mind me asking how did you get? I’m also in UK and wondering if I might have it. What sort of digestion issues are you getting?

Thank you

[meggiemog in reply to Moon_maiden]

Hi Moon_maiden, I had blood test done first but rheumatology said it would be a good idea to check salivary glands as my blood tests didn't show anything but my mouth is very dry. Digestive issues I have had for a long time. I originally started with really bad reflux, I had hiatus hernia and kept being sick. Had fundoplication done to repair this 4 years ago - but the sickness has come back as well as having bowel issues - nothing coordinates any more! I have given up gluten and found I have a lot of food intolerances to boot. Cutting out gluten has really helped. I have read that Sjogren's can cause motility problems as well as drying up the bowels - which makes sense to me. I have found that part of the problem is surgery related due to a recent endoscopy - but I am still waiting for an ultrasound exam. So many things seem to come and go in cycles that I could write a book on how contrary a body can be. This week has been a sore jaw and mouth ulcers. My advice would be to see a good GP and say I think I have Sjogren's and ask to be tested. Hope all goes well for you.

[Moon_maiden in reply to meggiemog]

Many thanks for your reply. I was considering it. I spoke to GP last Monday, although I didn’t mention it then, he said he’d refer me back to gastro and a new diagnostic clinic. This enables an overall look at symptoms and is fast track. No one has yet given any idea on why I’ve lost nearly four stone, I can’t eat much due to pain, and other stuff. So, as I’ve been ignored so much, I’m going to throw the lot at them 🤣

Mine started before lap for endo, but got worse after.

How are you doing now? Any further forward?

[meggiemog in reply to Moon_maiden]

Not heard from rheumatology yet but have an appointment to chat to upper GI surgeon who did my fundoplication. No idea if they can do anything. I have lost a stone and a half since July - mainly due to the fact I can only eat small portions without a massive amount of discomfort. Having a dry mouth and throat doesn't help either. I can imagine they will be giving you tests at both ends due to your weight loss - I have to say that a tube up is less unpleasant than a tube down ! If you want a Sjogren's test you would need to see your GP again as it's a different thing and a different department. Gastroenterology will only check the digestive tract and issues directly affecting it. Let me know how you get on.

[Pkaren in reply to meggiemog]

I have also had a fundoplication about 7 years ago I have recently had pain and bowl problems I went to see a consultant and I asked him about a dry bowl as I have Sjogren syndrome he looked at me like I was mad and said no probably irritable bowl so I had a colonoscopy and a endoscopy as I have had trouble with swallowing intermittently as well this has been going on for years but my wrap is not too tight I don’t have the reflux luckily it did cure that. But the pain I get from my stomach is not as bad as it was this seems to come and go as well but is always there just sometimes worse than others . I have a telephone call with the consultant in a few weeks but I bet all the tests I had done comes back normal unfortunately my local hospital is not that good they never find anything wrong I had to have my gall bladder removed but they kept telling me my blood tests were fine probably all in my head until I went to a London hospital who noticed as I did I was going yellow I had stones stuck in my bile duct so unfortunately I do not have much faith in my local hospital . Can anyone tell me is stomach problems common in Sjögren’s syndrome I have never met anyone else with it and any suggestions to questions I can ask the consultant please

[meggiemog in reply to Pkaren]

If you look on the NHS website for Sjogren's - then it mentions that it can lead to the digestive system drying up and causing IBS type symptoms and motility issues. The problem is seeing the wrong specialist. Gastroenterology are not interested in Sjogren's - not their speciality in UK - you need Rheumatology. They may refer you or perhaps you need to talk to your GP. I have 2 different things going on with me - I am being tested for Sjogren's with rheumatology and speaking to upper GI surgeon as my wrap is intact but may need tightening . Unfortunately I have had issues with gastroenterology in my local hospital, so I understand your frustration. If you feel that your issues have not been resolved then you have to go back to your GP and see what else can be done or ask for a second opinion.

[Kels1974]

I had parotid salivary ultrasound today at last, as my ultrasound had been cancelled a few times due to covid.He did several scans and images and asked how long my mouth had been dry, so I'm hoping something showed up.

[meggiemog in reply to Kels1974]

Fingers crossed you get some answers Kels1974. I have not heard anything about ultrasound - not likely in current situation I guess - but I do have a telephone appointment with surgeon who operated on my stomach 4 years ago. At least something is being done in part!

[Kels1974]

Does anyone know what my results mean? the letter says nonspecific changes only and will contact doctor after I have a biopsy.