How is Sjogren's diagnosed and how long does it take?
Posted , 9 users are following.
I am a Ty[e 1 Diabetic (33 years) and have been experiencing problems for a few months with what started as a purely dry mouth and has now changed to dry mouth with excessive saliva. My eldest sister has Sjogren's and there is a thread of auto immune conditions amongst 3 of the 4 sisters. My GP referred me to an oral surgeon who had an ultrasound scan done which showed no stones or growths in my salivary glands and bloods which revealed nothing. My GP then had a second lot of bloods done (Rheumatoid related) but again, these have shown nothing. I am not due to go back to the hospital for 8 weeks but the condition is worsening and becoming unbearable. My mouth overall is VERY dry, my tongue is very sore and yet I'm getting excessive salivation around my teeth (dentist has ruled out a dental problem). I am using gels and sprays (prescribed by my GP) and drinking water and eating healthily but nothing helps and I am becoming desperate. Please can anyone tell me how long it took for Sjogren's to be diagnosed, how it was done and what I can do in the meantime to make things more bearable. Many thanks.
1 like, 37 replies
tj268 wendy58491
Posted
Hello wendy and I am so sorry to hear about what you are going through. Getting a dx can be difficult and take awhile for most. Mine was found by my neuro though looking at my skin (he noticed my dark spots that never healed) and blood work. My ANA and other 2 tests came back positive. I was there for something completly different and it was the last thing I ever expected. He sent me to a rheumy who said I have Fibro and all 3 tests were false positives. He also dismissed other problems I have. He is a loon! All other Dr's said yes I have this and it was proven again thourh a posterior nose bleed and the surgeon said from the extreme dryness it was almost positively form SS. All I can recommend is have the bloodwork done and find a Dr you believe in! There is a lip biopsy that can be done but it controversial and could possibly cause nerve damage..possibly. I am against it but you can make that call. DO as much research as you can. WIshing you the best of luck and keep us posted!
wendy58491 tj268
Posted
Thanks tj268. I am really not sure where I am going with this. My bloods have all been normal and I have been self diagnosing and self prescribing. I am actually taking Vitamin B12 and Lipoic Acid supplements and have had a very slight improvement in the symptoms today but that is me clutching at straws!! All my bloods have been negative and all I know is that there is a problem and I won't stop until I either have answers or it clears up LOL!!!!!!
amkoffee wendy58491
Posted
According to my blood test I do not have Sjogren's syndrome. Although I have extremely dry mouth and dry eyes. Both are the symptoms of Sjogren's. But I chose not to do the lip biopsy because I felt there was no need since I'm just treating the symptoms anyway and I've heard that neither of those tests are completely accurate. Do you have dry eyes? Some of the symptoms of dry eyes are feeling gritty like something in your eye or runny eyes if they're very if they produce a lot of tears . When I was diagnosed with dry I my eyes with water in the morning after I woke up . And I'm talking about a lot of watering almost like you're crying. You can go to a rheumatologist and get the blood test done as long as you understand that it can give you a false negative. And like the other commenter said you could have the lip biopsy done if the blood test is negative but I saw no point in going through the pain of it since even it is not a sure thing . And it's not like there's a drug to treat Sjogren's . You simply treat the symptoms and I am already doing that. I use Restasis and omega-3 for my dry eyes and I am just now starting to deal with my dry mouth. I am very much like you in that I have an excessively dry mouth and my tongue is very sensitive and burns easily with foods . All my dentists insisted that it's burning mouth syndrome because of the sensitive tongue . But I completely disagree and I told them that I don't have the same symptoms as burning mouth syndrome is. The only way you and I differ is you said something about an excess of saliva I don't have that . I simply have cotton mouth all the time. I know that there are at least two medicines that you can get to treat dry mouth. I tried one and it made me nauseous so I'm trying a second one now and so far it has not made me nauseous . But it also happens to be very expensive . Doesn't that figure. You already have one autoimmune disorder and autoimmune disorders often times come in groups for a person. I personally have 5 myself. There is a group on Facebook that is for Sjogren's syndrome. You could join that group if you do Facebook. You'll find support and ideas for treatments from these people. I did and I learned about a kind of tablet that you can use to help with the dry mouth. You put this tablet between your gum and cheek and it stays there and slowly dissolves and it supposed to stimulate saliva . Personally I tried it and I didn't see that it helped much and I didn't care for the taste . But it comes in plain and mint and I got the plain because mint burns my tongue . I suppose if you can tolerate mint then you might go with the mint and that probably taste better. I know this has been a long post, I'm just hoping that I helped answer some of your questions.
wendy58491 amkoffee
Posted
Thanks for your reply and the suggestions etc amkoffee. There seems to have been a variation in the symptoms in that there seems to be huge amounts of saliva being produced and yet my tongue and lips remain dry. I don't really know what to say at this stage - I am overwhelmed by the symptoms, the replies, the information, the different possibilities. I have definitive symptoms of SS but other stuff too and I'm trying to get my head around it all. I DO appreciate all your comments !
lily65668 wendy58491
Posted
Hi Wendy,
The process of diagnosis varies widely from one person to another. Sometimes it's on the basis of lip biopsy, sometimes blood results, sometimes just on symptoms. And it usually takes a long time! Ten years from first symptoms in my case, and I believe some other sufferers report a similar time lapse.
First of all, don't get too desperate about your dry mouth. For one thing, all autoimmune diseases can be made worse by anxiety. Also, some of us find that our various symptoms can go into remission. Like you, my first SS symptom, 22 years ago, was an extremely dry mouth. My lips and cheeks kept sticking to my gums and I developed painful cracks at each corner of my mouth, which broke open and bled every time I opened my mouth to eat. Unlike you, I couldn't elicit any interest, either from my GP or from two dentists I consulted. They said allergy, old age (I was 51 at the time) or just shrugged their shoulders. I didn't know what it was either.
This went on for six months before it started to improve spontaneously, and it was another six months before it cleared up almost completely. And since then I've never really had a problem with dry mouth again! It can be a bit of a nuisance in the night, especially as I'm a mouth breather in my sleep (like most of us). I often wake up in the night completely unable to swallow, and with my tongue stuck to the roof of my mouth. But it hasn't troubled me in the daytime for more than 20 years now. So there's every hope that you won't always have this problem.
Once the mouth cleared up the peripheral neuropathy set in, followed by dry eyes. Over the next few years I developed Raynaud's syndrome, carpal tunnel syndrome and my thyroid started to pack up - though that's very easy to treat by popping a pill every day. Every time I saw my GP with these different symptoms she said the same thing - old age. It finally got diagnosed when, by sheer serendipity, I had a spectacular attack of Raynaud's in my left hand while in her office. She then ordered the appropriate blood tests, which clearly indicated SS (I'd asked for a copy for myself) but even then it was difficult to get her to admit it. She finally said that it was best not to have a diagnosis as there wasn't much that could be done about apart from treating the symptoms, and a diagnosis would only make the patient anxious!
The GP did send me to a rheumatologist after that, but she insisted on a lip biopsy before giving me a diagnosis. I read up on this, and decided I didn't fancy it. As I wasn't prepared to take any of the specific SS medications either (immunosuppressants or DMARDs), the rheumatologist and I agreed to part company, and I never saw another one. Four years ago, after a house move, I got a fantastic GP, who really understands both Sjogren's and me, and he's been managing my symptoms ever since.
These days my main problems are dry eyes and tendinitis in both arms and one leg. This is a more recent development, having started only about five years ago. I had a real crisis about two years ago, when it affected my right elbow and left thumb, severely affecting daily activities. However, it started to ease off after about six months, and is now much better, though the pain in my left arm still wakes me in the night occasionally.
The latest manifestation is mild asthma, for which I now use a steroid inhaler. This keeps it under control, though I have to use it more often on days when air quality is bad or the pollen count is high. Apart from that, my daily levothyroxine pill and OTC eyedrops, I don't take any medication. I do, however, take quite a lot of supplements, including fish oil capsules.
A few people do get very unlucky with SS, and develop significant organ damage. However, many of us find we can manage our symptoms conservatively and lead normal lives. I'm 73 now, have had SS for 22 years (although only diagnosed 12 years ago) and I'm just as fit and healthy as any of my friends of similar age. Try and keep a positive outlook. This really helps. You're clearly on the route to diagnosis, and once you have this you can be prescribed stronger medications if that's what you want.
amkoffee lily65668
Posted
Dear Lily I read your comments with interest because you taught me a thing or two about Sjogren's syndrome. I have five autoimmune disorders unfortunately. One of them, PMR I have to take prednisone daily for, for years until it goes into remission, in order to control the inflammation and pain it produces . So my rheumatologist tested my blood and it tested negative for Sjögren but I decided not to do a lip biopsy because they aren't much more accurate than the blood test which came back negative. Anyway my question to you is this, during the time that you had a dry mouth did you also experience a sensitive or sore tongue . I'm asking because my tongue is extremely sensitive to strong flavors. A lot of things will burn my tongue such as mint or something like Italian dressing that has the vinegar in it even cranberry sauce burns my tongue. And Wendy mentioned a sore tongue . So I just wonder if this is not a common symptom of Sjogren's
jennifer09136 amkoffee
Posted
In SS where there is little-no saliva the mouth has been stripped of a much needed protective layer. Who knew that saliva was SO essential????? I didnt and it was many years before this was expalined to me. Saliva washes the teeth and protects the mouth. I cannot eat any spice at all as it "burns" every mouth, gum, tongue and oesophogeal surface it touches. The pain is extreme and lasts up to 15 minutes. Drinking water brings momentary relief but does not reduce the time it takes for my mouth to recover. It is almost impossible now to choose a menu item without chilli, and i inwardly scream whenever waiter or frined says "it's only a litle bit spicy, you'll be OK." I prefer hunger or bland foods to my moith reaction. Citrus does the same with varying reactions - sometimes its OK but often not. Just adjust your diet and choices rather than search for treatments or explanations is my approach.
lily65668 amkoffee
Posted
Hi amkoffee, I thought I posted a reply but it seems to have disappeared, so I'll repeat it. My tongue was slightly sore during the period of extreme dryness, and I seemed to get a feeling of roughness on my tongue as far as I can recall (though it was a long time ago!) However, I don't recall any burning, and I know I didn't have increased sensitivity to the flavour of any foods. If anything, I seem to recall food didn't taste of very much during that time. I still occasionally get the rough feeling on my tongue, but no soreness.
wendy58491 lily65668
Posted
Hi Lily65668,
?Thanks for your response. You mentioned eliciting interest and to be quite honest, that isn't actually the case. I am quite 'forward' and have pestered and pestered to get this far. The oral surgeon really patronised me and put it down to my 'time of life' and suggested that I was imagining it. I got the scan through getting lucky and the bloods through the pestering!
?I understand there is no 'treatment' as such for SS but I believe that I am probably just putting feelers out as this has hit me like a bolt out of the blue. I am very sorry for the things you have been through and I have to say you make my problem a walk in the park! But seriously, my mouth is in an awful state. The dryness affects all the periphary, my tongue and the tonsil area but then this horrible, gloopy, mucus like saliva pools under my tongue and even feels like it's leaking from my teeth. It seems to burn and my tongue and the roof of my mouth are permanently sore/tender. But this dryness remains prevalent and I can't find any relief or have any idea how to help myself.
I'm sorry but I need to get some sleep as I start work very early. Thanks again for your response and I have taken on board everything you have said and appreciate it. I intend replying to all comments over the next couple of days, when I have been able to absorb them properly!! (It's all new to me!!)
lily65668 wendy58491
Posted
Oh yes, we've all been through that thing with the doctors!
I think it's partly down to simple ignorance. I suspect Sjogren's may just not get taught in med school, even though it was identified in 1928. I still remember that when I was training as a nurse at a London university hospital in the 1960s we covered SLE, Hashimoto's thyroiditis and scleroderma in our studies of autoimmune conditions, which we did alongside medical students. And I vividly remember caring for a poor woman, not yet 40, who was dying of scleroderma when I was in my second year. But I have no recollection of ever hearing about Sjogren's syndrome. When it started happening to me, 30 years later, it was another five years before I stumbled across the term while researching my ragbag of apparently unrelated symptoms on line.
I think another reason for their reticence is that it's neither curable nor - for most of us, anyway - fatal. Since they can't carry out an operation or prescribe a two-week course of pills that will cure it for all time, and it's unlikely they'll be sued for malpractice if the patient dies, they prefer to sweep it under the carpet. They fail to realise the amount of pain, inconvenience and even disability it can cause. And as far as I can make out from some of the posts in here, all this can also be applied not just to GPs, but sometimes to rheumatologists - who're supposed to be the experts on autoimmune conditions!
While it's true that it can't be cured, it can certainly be treated, and the symptoms alleviated. As well as the various medications and topical applications that can be used to address individual symptoms, there are DMARDs (disease-modifying anti-rheumatic drugs) like hydroxyquinolone and low-dose immunosuppressants like methotrexate. Some sufferers find steroids help, and now there's low-dose naltrexone (LDN). This still isn't generally available, but will hopefully come into its own over time. I'm personally rooting for the latter! Although I've now agreed to use a steroid inhaler for my lung inflammation (following reminders from my GP that even lifelong smokers can get COPD) I don't fancy going on systemic steroids. I'm not keen to take hydroquinolone either, having looked up its possible side-effects, and I personally wouldn't touch immunosuppressants with a barge pole. That's not to say that others haven't had great relief from their symptoms in taking these medications. As TJ says in another post, we all have to make our own decisions, whether it's on lip biopsy or medication. I only heard about LDN recently, via this site, and I must admit that is one I would like to try if I could get a doctor to prescribe it. But I don't think that's for next week, or even next year...
There are some things you can do to alleviate your mouth problem. Obviously, stay well hydrated, as you've already said. But it's better to drink little and often, rather than large quantities of water at one time, as this can wash away what little saliva you have. Take extra care with dental hygiene, but without overdoing it with hard brushes or aggressive toothpastes. Avoid eating sugar - which includes fruit juices and smoothies, even the home-made varieties. It's better to eat fruit in its natural form, and not too much of it. Fruit contains sugar too - albeit the natural kind that's far less harmful than refined sugar, but it shouldn't be overdone.
I don't know much about mouth gels and sprays as I've never used them, but I know a lot of other posters can help on that one. I do, however, know all about that thing of your mouth filling with thick gunk. I get that too, even though my mouth isn't noticeably dry these days. It's mainly a problem during the night, when the stuff sometimes gets into my throat, where it's too thick to either swallow or cough up. It can even threaten my airway. (Sorry if this is a bit disgusting to read!)
I find that eating dairy foods makes it worse - especially cheese. The other main culprit is chocolate, and especially milk chocolate. I've heard that opera singers avoid milk chocolate like the plague for just this reason. I eat a little cheese, but try to avoid it in the evening. Ditto chocolate - but only the dark, 86% cocoa kind.
On nights when I've broken my cheese rule or just feel particularly full of mucus, I take an OTC mucolytic. I used to take bromhexine (which I believe isn't available in the UK). However, my nasal and oral mucus took on a life of its own during a nasty cold a couple of months ago, and bromhexine was no longer enough. My pharmacist recommended acetylcysteine tablets, which I've found to be far more effective. I now always make sure I have a pack of these in the bathroom cabinet, though I only take one on a few nights a month. Even if neither of these products is available where you are, you could always ask your pharmacist for advice. (They're often more use than doctors!)
There's plenty you can do to manage your own symptoms, especially by identifying dietary, environmental or lifestyle triggers. And if you don't feel that's enough, there's a whole range of medications that your doctor can prescribe. You'll need a firm diagnosis before these can be prescribed, but I'm sure someone of your determination could manage that!
aitarg35939 lily65668
Posted
And SS was "discovered" in traditional oriental medicine long, long, long before 1928 -' and then it was forgotten about! No mention for hundreds of years.
Wendy does have a tougher battle than the rest of us, fighting that, "well, of course your mouth is dry: diabetes! Let's not look for zebras like Ss" mentality.
lily65668 aitarg35939
Posted
I didn't realise it was known about in ancient oriental medicine - though I can't say I'm surprised! I agree about Wendy's problems. However, I don't think you even have to have diabetes to produce that attitude. In my experience just being beyond menopause will do it too! As in: "Well you have to expect this kind of thing at your age!"
wendy58491 jennifer09136
Posted
Jennifer09136 - Like you, I am adjusting my diet and using trial and error to find things that 'suit' me. Strangely, I have actually had an improvement in the sore tongue today (slightly!) and perhaps I am clutching at straws but I am putting it down to B12 and Lipoic acid supplements which I have only been taking for a couple of days! Who knows?! Good luck with your situation and thanks again.
lily65668 wendy58491
Posted
You know Wendy, many illnesses - and most especially autoimmune conditions - are partly controlled by our attitude to them. Often the very act of taking charge of our own treatment can communicate to the immune system that it's not going to get its way all the time. I actually talk to mine on occasion! I'm not making this up, and I don't think I'm crazy. (Others might, but they're entitled to their opinion too!
)
I've been fascinated by the immune system for a long time - initially from a medical point of view, and now increasingly by the philosophical aspects. Seems to me we're finding out more and more about how it functions, but we still know nothing about its nature. I studied Eastern philosophy for a while, and it seems to me that it contains hints about what the immune system really is. I don't think it'll happen in my lifetime, but I do believe this is the next big discovery waiting to be made - one which will revolutionise the nature of medicine, just as the development of quantum theory (some aspects of which were also foreseen in Eastern philosophy) revolutionised physics.
wendy58491 aitarg35939
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wendy58491 lily65668
Posted
lily65668 wendy58491
Posted
Interesting how this attitude seems to be universal too. I know we have women from at least three countries in this particular thread and we all seem to have had similar experiences. It doesn't just come from elderly male doctors either. The GP who constantly told me my symptoms were just down to old age, when I was only in my 50s, was a young woman who'd just set up in her first practice!
aitarg35939 wendy58491
Posted
Went & Lily, there is a corollary to what Lily said about talking to our bodies. I believe that we can direct our systems away from becoming entrenched in illness. This has been tremendously helpful several times. Test results don't show anything definitive? Great: I must not have anything definitive. I stop thinking about whatever it is, or stop thinking about it so much. If things improve or don't get worse in a few months, i blow it off.
The first time this happened i was 28. Sick for 3 years. Finally a GI doc said, "It's one of these 3, and We're hoping it's the last: Crohn's disease, ulcerative colitis, or endometriosis." I looked into them and agreed that I'd much rather endo than the other 2. And sure enough, that was it.
3 years ago I had terrible, inexplicable abdominal pain & nausea for most of 10 months. My general syrgeon, ER doc & GO all believed I needed spinal surgery, that degeneration was impacting abdominal nerves. I booted at that, absolutely certain that they were wrong. Eventually saw a neurosurgeon, and he agreed with me: no spinal surgery needed.
We never found out what the problem was. It went away. And I got to avoid spinal surgery which I've rejected since 1990.
I've never been able to halt an illness that was already firmly entrenched in my being, which includes of course my brain/psyche. I try not to let things get there, lol
wendy58491 lily65668
Posted
The surgeon who humiliated me was a white, trendy man, probably in his mid to late 30s. I felt 'invisible', once I'd gone through the shock of the humiliation of the suggestion I was a fraud. I did bounce back and am now under another oral surgeon but I won't be meeting him until 21 September (non urgent apparently)!!!
wendy58491 aitarg35939
Posted
Throughout my life, I have had several experiences of refusing to be beaten as it were, and my gut instinct has served me well. I refused to be put off 6 years ago with a gynae problem and eventually, the consultant agreed to do a hysterectomy (just to shut me up I believe). After the op, he confirmed that it was Endo and I felt vindicated.
?What is happening now is a new one and for the first time, I don't feel I have the option to take control as I always have. This 'condition' is marching on, regardless of anything and my mindset is currently that of the victim. I don't intend staying that way but as yet, I have been unable to take back the reins. However, the 'real' me is a survivor and a fighter and I will dig her out again!!
amkoffee aitarg35939
Posted
I'm glad that for you all of this positive thinking has worked. But I'm sitting here with six autoimmune disorders and believe me I would do anything to get rid of them . Because on top of the six autoimmune disorders I have I also have chronic pain in my lower back . I am not a hypochondriac I don't make these things up and test results prove I'm a sick person . But all the positive thinking in the world isn't going to stop my illnesses . I wish it would.
Tumtum1963 amkoffee
Posted
Amkoffee - I don't think there's so much positive thinking here - rather a mix of realism and pragmatism. You have six - I may have too - I've been diagnosed with 3 so far and my Sjögren's affects every iota of my body now - I'm lying in bed trying to work out if the cramping pain under my bum and thigh is my severe arthritis of lumbar spine or the kidney infection or maybe diverticulitis. I can blame all these on my Sjögren's. So in a sense it's not how many AI diseases but how severe and also how we deal with them. Of course it's grim - and if Sjogrend affects your nervous system and digestive tract and spine then it's just as awful as any other disease or any other combination of diseases. I firmly believe it's all one big spectrum and we all have our unique place on this whatever name they give it.
aitarg35939 amkoffee
Posted
Amkoffee, I have several autoimmune diseases and suffered a life-altering injury 27 years ago. Every disc in my back needs repair, except for the thoracic section, which is fine. I have had arthritis since I was 16. I cannot begin to say where a very athletic youth, Sjogren's, Lupus, arthritis and old age leave off so another can begin. I've got bronchiectasis so bad that apparently i won't be able to have the eye surgeries I need because no one will sign off on anesthesia. I've got a massive muscle spasm all over the right side of my back that is 27 years old and counting. And yes, I had a total hysterectomy at 27 for endo, and it came back later and caused another massive abdominal surgery with removal of a section of colon. Followed by an infection, reopening of the incision in 3 places and a lovely wound vac for a month or 2.
I never mentioned positive thinking because I was not suggesting Sylvan Mind Control because I disagree with it. But our minds are so powerful! We have learned so much about what happens in our bodies when we think in particular ways. When we think angrily, harmful chemicals cascade through our system and it takes 24 hours to clear them out. When we think of more pleasant things, better chemicals course through us. With my own eyes I have seen children in Mexico have a corn wagon roll across their chests after they fell off it, i have seen their ribs go flat with the wheel on them, then those children looked at each other, burst into laughter, got up and climbed back into the wagon. That happened in '63 and those girls are alive today. No one told them that they were supposed to die that day and there was never time for a fear reaction to set in. They literally laughed off the injuries and never even had bruises.
I have seen other similar things happen in my life. For myself it has worked several times when I've gone through justified batteries of tests which showed nothing. Other times, symptoms progressed further until they could be medically diagnosed.
As the saying goes regarding sex and orgasms, the mind is the most important factor. I personally am willing to harness it when I can for healing. I wish I could heal myself of the entrenched illnesses I've got. Maybe someday.
Everyone else is completely free to not talk to their bodies and consider what I've said to be hogwash.
wendy58491 lily65668
Posted
lily65668 aitarg35939
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Aitarg, this post, together with the other one you wrote later the same day, is the best thing I've ever seen on this thread! It encapsulates everything I believe about the nature of the immune system, and your other post describes phenomena I witnessed myself during my time as a nurse.
Since I'm not sure how much longer this thread will be around, I've sent you a reply by private message.
aitarg35939 wendy58491
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Wendy, I'm so sorry about your friend. You're in my thoughts.