I have sjorgens symptons and need to know what tests to ask doctor to do?

Hiya Scoobieworld, firstly I don't think there is a test..??? I use a artificial saliva..over the counter..minty taste- very good..also I use drops for dry eyes-over the counter too...works wonders, I didn't have any tests..that was 24 years ago I was diagnosed just by what I presented at my doctors with a very very swollen face on both sides..near my kneck....he just knew straight away..then I was diagnosed by a Rhumotologist with Fibromyalgia Syndrome 2 years later..they are very similar, but really different..both auto- immune....I'm in Australia.so it's pretty useless telling you names of things....but a a referral to a Rhumotologist would be really good for you.. I went through menapause round the same time as both diagnoses, but I used and still do albeit not as many "black cohosh 'Remifemin.' Is the name of the tablet name -made in Germany. In over 25 counties.....natural pharmacy meds...they are amazing...for every symptom that menopause  throws at you...I wouldn't take prescription HRT meds because the scientific knowledge is out there...they can cause breat cancer...that was enough  for me to know not to take them..hope you get sorted really soon, it's just awful having them both together..be blessed..it's 20 to 11 and I'm off to bed....:-) xx

Hello, ask to be referred to rheumatologist, they can do a blood test checking for antibodies: anti ro and anti la, if you are seronegative (no antibodies) they can do the schirmer test, bloting paper in eyelid

Testing how much tears you produce if it is affecting your eyes and saliva test, not sure if the name but I believe you chew a sponge and they weigh it for saliva production. Failing that they can do a lip biopsy to check for antibodies. There is not cure for Sjögren's so the aim is to reduce symptoms with treatment, you will need a really good dentist who can periodically check your saliva glands and help you adopt the best possible dentil routine (lack of saliva can cause greater tooth decay) and a really good eye doctor (as lack of tears can cause eye damage) the rheumatologist can advise on how to treat any other problems that can come with Sjögren's but if your gut symptoms are sever it may be worth while asking for referral to gastrology as well. This may seem a lot, but Sjögren's can be systemic and it is not uncommon to be under several consultants good luck xx

I agree with the other replies. My Sjogren's is nowhere near as bad as yours. Well, not so far, anyway - first symptoms around 50, only diagnosed 10 years later (about par for the course) and now, at age 71, has been largely in remission for the last six years. All I have these days is dry eyes and thick upper respiratory secretions that can choke me in the night, but I'm aware it could flare up again as I get further into old age.

My own condition was finally diagnosed by a blood test for anti-salivary-gland antibodies. My ophthalmologist has also recently done the completely painless "blotting-paper" test under my eyelid, and that came up strongly positive, but only for one eye, strangely. I understand they sometimes do a lip biopsy in the UK too, but I'm not a UK resident so have never been offered that. As Jenny says, the condition can't be cured anyway and there are very few specific remedies that can be offered, but at least it might be helpful to have a name for all this.

I also agree with Jenny that you should ask to be referred to a gastro-enterologist, if you haven't already, as these symptoms may be down to something different. As she says, Sjogren's can affect various systems, but in my experience (both as a patient and former nurse) it doesn't normally cause such severe G-I symptoms.

I think the jury's still out on HRT. When I hit the menopause at 45, five years before my SS symptoms started, my GP actually took me off her list when I refused to take it - told me I'd be crippled/dead/whatever in 10 years if I didn't! I got the impression I was the only post-menopausal woman in this (admittedly rather small) country who wasn't taking the stuff. Now the same doctors who tried to scare women into taking it in the 80s and 90s are trying to scare them into stopping, on equally flimsy evidence.

I therefore have no personal evidence of the effect of HRT on SS, either way. Why don't you give it a six-month or one-year trial? There are no risks in stopping it if it doesn't suit you, though it's not advisable to keep stopping and starting. It is true that my SS started five years after my untreated menopause, so who knows? But don't pin your hopes on the power of HRT to help you lose weight. Most of my friends took it at one time or another and all claimed it made them put on weight!

One other thought on weight gain. Have you had blood tests for thyroid function? These are very simple, cheap tests, but I know the NHS discourages doctors from ordering them for some strange reason. Sjogren's quite often attacks the thyroid gland, which can cause tiredness, weight gain, constipation and hair loss (among others). I was diagnosed with an underactive thyroid, secondary to Sjogren's, six years ago and have been on thyroxine (synthetic thyroid hormone) tablets ever since, with good results.

I'm lucky enough to live in a country where I can self-refer, but I worked in the NHS for 10 years as a young woman, so I know how difficult it can be to get referrals. You do, however, have a right to insist on referral so don't let your GP bully you. A rheumatologist would be a good place to start for SS - or preferably an endocrinologist if there's one available in your area, though they seem to be an endangered species these days, on both sides of the Channel. Sounds as if you might already be under the care of a gastro-enterologist for your leaky gut, but if not, you need to be seen in that department too.

Above all, don't despair. SS, like all auto-immune conditions, is very prone to sudden remissions, or even spontaneous cure. Keeping your spirits up will send the right message to your over-active immune system too.

Why on earth has the moderator suddenly started deleting posts on here? My own post (two minutes ago) contained no external links, no references to commercial products and certainly no abusive or critical comment. Except for remarking that doctors can occasionally bully patients... Was that it?

Scoob,

The first blood test that indicated a problem for me was the ANA I asked for this test because a friend of mine said my symptoms sounded like Lupus. This test came back positive. My doctor then referred me to a Rhuematologist who then ran an SSA which I understand is Specific to Sjogrens and an SSB which I'm not remembering what that was specific to but maybe your doctor can tell you or you can look it up. My SSA was positive and he gave me a diagnosis of Sjogrens. The positive ANA indicated an Autoimmune condition which I understand is frequently present in people with Sjogrens. My results indicated Mild Systemic Lupus. He then started me on 400mgs Plaquenil a day. That was August 25,2014 I have had improvement in my symptoms every month. The triick for me was finding a good communicative doctor and educating myself. An excellent book that talks about diet,dry mouth,skin ailments, pain etc. is called Coping With Lupus it really helped me. I am back to feeling well and my quality of life has improved tremendously so don't give up hope just advocate and educate you will get through this. Feel better,

Sally

Thank you so much for all your replies, much appreciated. Have just had my blood taken for initial tests. My diet is very limited, at the moment my safe foods are tuna, salmon, cucumbers, peppers, onions and eggplant.

i feel really ill at the moment, all I do is watch the tv and just a very short walk with my dogs....will this improve or will I just continue to deteriorate? Am so frightened and alone xxx