Sjogrens or what?

Can you add all the treatments and test you have had done, please.

I am not very up on medical things unfortunately but my GP did the whole lot of bloods covering everything one would have for an mot type session then when I mentioned SS he said the only other one he could d o was an arthritic test which was normal. The only abnormal test was my platelets which were180. (should be 150 to 200) but were 130.

Funnily the dip was when I started with these symptoms.

I pointed this out but got nowhere with the doc.

I can live with it as it is at the moment except the ghosting in bright sunshine worries me.

The numbness in my hands initially ment I was sent to have a carpal tunnel op which did not stop the problem.

Funny that really only is a problem at night and wakes me up every two or three hours.

 

Quite honestly I have not had a positive test for SS. My rheumatologist gave me a blood test which was negative but it's my understanding it's a rather broad test for several times of autoimmune diseases, but it was definitely negative. A few months after that I decided to go ahead and go with lip biopsy. Lip biopsies can be done by an oral surgeon or by an ear nose and throat doctor. My biopsy came back inconclusive. That really was frustrating. I have a lot of the symptoms of Sjogren's so whether it is the actual disease or not makes no difference to me. I have to be treated for the symptoms i have. Like my dry eyes and my dry mouth, a dry nose and even dry earr canals. I mean the list goes on about dryness at least with me. But talking to other SS patients I've learned a lot of things I can do to help with the symptoms. First of all if you have dry eyes you should see an eye doctor. They will do a test to see if your eyes are dry and how dry they are. If that's the problem then they'll tell you how to treat it. My eye doctor suggested trying Omega 3 supplements in addition to the drops. There are lubricating eye drops that you can purchase OTC. Using those several times a day can be a tremendous help for dry eyes. You can also go see an ophthalmologist who can put plugs in your tear ducts. Apparently this keeps your eyes moist. I don't quite understand it doesn't seem to make sense to me but it does work. but you need to get something that says it's lubricating not something that takes the red out, so no Visine. As for your dry mouth everybody does that differently there are so many things you can buy to help with it. I cannot seem to use anything because strong flavors like mint burn my tongue (I don't know why). So I just sip water all day everyday, every second of the day, I have water near me. Of course drinking too much water like I do makes the matter worse then helping it because that washes away any "good" saliva that contains a moisturizer. there are two medications that I know of that a doctor can prescribe to you to help you with dry mouth. Ultimately there is no cure for SS so you choose what you want to fix. Like dry eyes or dry mouth maybe you can live with one of the other ones not too bad right now. Good luck with that and please keep us posted.

Hi belveze, the blood test Total Blood Pattern tells the rheumatologist what autoimmune issues you have. You can have primary or secondary SS. I have primary SS (so I don't have any other autoimmune conditions except SS) .For dry eyes I use lubrication drops (without preservative ) and also have plugs in inner corners of eyes (to keep any moisture from leaving via the tear ducts) I also take fish oil supplements. For swollen joints /tendons I also take hydroxychloroquine (rheumatologist also suggested Evening Primrose oil capsules) For dry mouth I sip water all day and chew gum (sugarless variety)  .About 4 weeks I was started on gupisone and methotrexate; these last 2 are only temporary measures..

Ask the rheumatologist to do a Total Blood Pattern (blood test).