Negative bloods

[Pyxie]

Hi I am new here and new to these symptoms of extremely dry mouth and dry eyes, I have weight loss and fatigue also. I recently had blood tests which came back negative. The doctors receptionist told me over the phone and no mention of needing to see the doctor again or have other tests....I have just read that many people don’t test positive with bloods, I know that what I am experiencing is not normal and all my symptoms point to Sjogrens, I don’t know what to do next?

[GreenSaab]

Hi Pyxie - I am also new here. I am also negative for bloods and had medical professionals more than happy to leave it at that. I think it must be a very under-diagnosed and under-treated disease for this reason. This week I paid for a private ENT surgeon to do a minor salivary gland biopsy, which is the gold standard for diagnosis. It was costly but I get my results back next week. I was fed up with not being listened to by my medical team and was having some very frightening systemic symptoms. I also had unintentional weightless in a recent severe flare, but my weight has stabilised again now that I am feeling a bit better. I had a rheumatologist warn me I could have a numb lip for up to a year after the biopsy, and my lip is currently numb, so fingers crossed that is temporary. It is a complication to consider if you do want to go down that track.

[Bookblue]

I would go to your optician and see if they can help with diagnosis. They sell several types of eye drops that can help and give advice. I was diagnosed by a rheumatologist ( my joint pain was through the roof). He diagnosed SS after listening to my symptoms and said negative blood tests happen in many people. He even said " don't worry you are not going mad" when I described symptoms I felt my GP did not take seriously. He prescribed something for dry mouth but I haven't needed to use it yet. I drink water whenever my mouth is dry.

My advice would be go back to your Dr and insist you need further investigation. My rheumatologist said it can take up to 7 years to get a diagnosis 😕 Dont give up ...

[Pyxie in reply to Bookblue]

Thankyou it is so frustrating to just be told oh your bloods are fine and then nothing, I will be calling my doctor again tomorrow to arrange more testing