Syogren's Syndrome diagnosis

I am new to this and I have not been diagnosed.  Are the anti-salivary gland antibodies found with a biopsy? I am experiencing a little in terms of dry mouth, eyes and nose. My main complain at the moment is feeling tired frequently.  The blood test showed a positive RA factor but did not find any antibodies. An ultrasound has found some evidence of what could be autoimmune activity in the submandibular glands and thyroid. I wonder if anybody has had that before being diagnosed. I have seen in this forum that a lip biopsy is not always positive even if you have SS and I'd rather avoid that, if possible.

Actually, there are other symptoms as well, head aches, inflammations in my body that come and go, pins and needles in my feet. that kind of things

No, the antibodies were found on a blood test.

And I too have all the symptoms you describe in your additional post. I've had this ragbag of symptoms for 23 years now, and though it's very slowly getting worse, at age 73, the condition is still nowhere near disabling for the most part.

What you need to remember about Sjogren's is that it can take a very different course in different individuals. The sufferings of some of the posters on here are clearly very severe. However, that's not the case for all of us. For me, SS has been more of a nuisance than an illness, at least for most of the time I've had it. In my case it tends to go in a series of flare-ups and remissions, with the remissions very gradually getting shorter as I age. Apart from a few periods - like the six months or so when I had tendinitis simultaneously in my left thumb and right elbow - it doesn't interfere with my life unduly.

The severity often varies with age of onset too. It more commonly starts in women around the age of 50 (as in my case) but can start much younger. Some poor souls even report it starting in their teens. I have the impression that - with some notable exceptions - the earlier the onset, the more severe the condition. I suspect that's largely because it's a progressive disease, and it simply has more time to progress in people who get it when they're young.

Thank you for your reply. Even though I do not know what course it may take with me, I find your answer reassuring. I just hope I will get a diagnosis soon because even though in theory it makes no difference, in reality it does. 

I have 7 nodules or goiter on my Thyroid. I have has biopsy's on 4 3x ea, all neg.  I did have a lymph node found in the submanidable which wasn't there last time Now the ENT said she didn't know what that meant, My Gp said we have to keep an on that. My Endo said see you next yr.

Probably the Endo wants to see you next year to keep an eye on it too. But it is nothing to worry about at the moment.

 

I understand these are hard times and you are worried, but you need to keep it together. From what you are saying there is nothing bad in the ultrasound. Your rheumatologist is still investigating, so that is good. He is going to rule out cancer, that is how you need to think about it. You need to take one step at a time or you will burn and crash. I wish I could help you, but as you can see I do not have many answers. The only thing that I can say is that if you stress like this you will feel worse and it will not do anything good for you. You need to keep strong and on top of it so that you can ask the right questions. I have done my stressing so I speak from experience. 

Hello diane03050!

I have noticed a few times in your posts that you have said you have POLYMYOIYIS. Are you sure it is not Polymyositis? There does not seem to be any condition named Polymyoiyis that I can find. Is it possible that your doctor has mispelled it?

Respectfully, Megan

it is POLYMYYOSITIS  I am sorry about the spelling

Hi just wondered is rhis what you mean: Polymyositis (pol-e-my-o-SY-tis) is an uncommon inflammatory disease that causes muscle weakness affecting both sides of your body. Having this condition can make it difficult to climb stairs, rise from a seated position, lift objects or reach overhead.(21 Jul 2017)

https://www.mayoclinic.org/diseases-conditions/polymyositis/symptoms-causes/syc-20353208?ved=0ahUKEwigm7KZw6baAhVmFMAKHeuTA_kQFggzMAI&usg=AOvVaw3l1hjqz3ijohxNG9JW1oE

I hope this helps, my Dad at 90 had dermamyositis, which effected his skin. He looked online and found out it can be related to S. S.

Diane, from my experience of working as a nurse in the UK's NHS many years ago, as well as dealing with it in both my parents' last illnesses, I think you should count your blessings that you live in a country where your doctors trust you with your own medical records.

Both in my career in the 60s and 70s, and while looking after my parents from the 80s to the 2000s, I found the NHS was spectacularly bad at passing on patient information. Since patients weren't allowed to keep their own records either, this resulted in all kinds of misdiagnoses, lost test results etc.

I've lived in Belgium for the past 40-odd years, where I'm required to look after my own test results, referrals etc. like you, and I find it a much safer system. It's also cheaper, so countries who work this way don't have to waste precious health-care funding on a vast administrative infrastructure.

Ah i really feel for you my right eye is my best and yes i do have dry eyes. Using eye r drops helps. Blurry eyes can mean eye infection such as blepharitis. Your doctor can advise or pharmacy.