The Australian Sjögren's Syndrome Association
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I AM GOING TO HAVE BLOOD TEST FOR SJOGREN'S what it it shows negative

I'm 66yrs old I have suffered with a connective tissue disorder or fibromyalgia for over 30 years but only diagnosed as such about 14 years ago.That God send Specialist left haven't found anyone as good.

I suffer joint pain and even between every rib and along the bones areas. I have been taking Plaquenil over the last 8 years or so and maybe this had helped. As I was an utter mess with fatigue and pain.

Over the last 5 years or so my mouth is very dry My teeth have deteriorated, I have severe gastric reflux.

But now also my voice tone is changing at at times fades away. I get dry prickly feeling in my throat.

My coughing at night is not helped by drinking water. But I have worked out that by going to bed with chewing gum helps stop the coughing. But I am worried of choking on it when asleep. I don not know what kind of tests they will run for this to find out for sure. I feel that most specialist treat you like an idiot and even show some kind of disdain if you sound like you've been reading up on the subject.

5 Replies

HI if you voice is becoming hoarse and you have been given a diagnosis of Fibro.. be aware that is is often and underactive thyroid.... the TSH tests are really not fit for purpose.... and the Thyroid is often missed, even though so common if you already have other diseases such as yours. MaryF


about 10 years ago a natural therapy doctor gave me a thyroid antibody test. And it showed that it was off the scale over 6 thousand of something it was like that for some years I was not treated for any thyroid tests showed nothing amiss thyroid came back ok. So why so many thyroid anti bodies. the doctor said as long as nothing is damaged it's ok.


Oh dear you have all the symptoms of Sjogren's Syndrome and yes I agree that the medical profession treat you like an idiot, some anyway. I believe because they themselves do not have the answers for such a difficult to treat disease. I have had SS since 1994 and it took two years to diagnose it, one Dr even suggested that It was all in my head. have you been to a Rheumatologist? You may get some help there. The plaquinel you are taking is only directed at eyes and is not good long term. You can get relief from your influx with medication and also by not eating foods that set it off.

I wonder whether it may pay you to go onto a vitamin and mineral course, people with SS are lacking in these important nutrients. Maybe something like Centrum. I have been taking them for years and it has helped a lot. I also take a natural product called Mannatech which I have to get from Australia via the internet as it is not available in N.Z. I have been taking this for years and have had a much better quality of life energy wise. It helps to rejuvinate the cells in your body and is made up of a variety of plant foods. I take the Ambrtose powder along with the Plus capsules. It is a dietary supplement and well worth trying. Look it up on line. I would also suggest Omega 3 oils such as Flaxseed and Cod liver but a good quality preferably from a health shop.

They take a long time to kick in depending on how long your body has been fighting an auto immune problem . If you decide to try it keep on it don't give up after the first course, it may be a few months before you notice any difference. It may cost a lot financially but hey it's your health we are talking about.

keep up the chewing as it helps to produce saliva, lack of it is what causes the gastric reflux. You will find that medication for reflux will help and you will not have to rely on chewing gum at night. Good luck.


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I use Xylimelts at night to keep my mouth moist. You stick them on your gum and they slowly melt through the night.

I'm in the UK and get them through


I find that Melaleuka honey a spoonful when coughing is very good also there is a medicine for dry coughs called Ricodene Lingtus 5 mills when coughing is very good it numbs the throat and stops the cough. For the pain Grapeseed tablets are very good and for your mouth Denta-Med this is very good for mouth ulcers, gums receding and bleeding


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