sero negative sjogrens?

I am the same way. It stinks. Prayers for you

Sjogrens is very hard to diagnose I have had it for the past 4years and it is getting worse. One of the problems is GPs do not recognize this disease at 70 oh it’s just old age well it is not when you wake up 4times a night put drops in swallow water which tells your brain you are awake you need to go and urinate not to mention arthritis in your hands and feet
And to put the cherry on top I have sleep apnea . So we have to be our own expert . I have tried nervous Rx eye drops no success. We have to be careful the cornea can get warm Down
So here’s my new regime point at night for the eyes elevated pillow sleep on my side(breathing) only a small sip of water (fool the brain)
Every day is a challenge by morning I can hardly wait to get up. Oh yes and throbbing headaches in the am caused by low oxygen producing more cO2 to the brain. I know I’m venting but when you tell your health professional they don’t understand how sleep deprived we are. Any ideas out there I would love to hear them

I had symptoms for several years. I was convinced I had it. However, every doctor I saw said I didn’t have it. This included rheumatologists, ophthalmologists, dentists, and I can’t even remember them all. Finally, I saw a new rheumatologist after I had been doing a lot of research on Sjogren’s. What I found is about 30% of people with Sjogren’s are seronegative. This doctor was kind and patient. I told him I had read that having a lip biopsy was the only definitive way to find out if you truly have it. I had to find this out myself, as no doctor ever even mentioned it to me. He agreed to order one for me. Sure enough, I definitely have it. It felt like a weight had been lifted off of me. Someone finally believed me. Since then I have been able to get the proper medication and care. Unfortunately, though, that kind doctor left the area, and it has been very challenging to find a really good one. My suggestion is to insist on a lip biopsy. I did not find it painful, as so many say it is. Wishing good luck to you.

@lynda12345

Are you able to see a rheumatologist? That is who I get my medication from.

Hi! I'm 77 and I've always been seronegative, despite symptoms starting in childhood. Lip biopsies can be negative in as many as 30% of cases according to the latest research and treatment guidelines (see the report from the Sjogren's Foundation). The guidelines stress the importance of basing treatment on clinical signs and symptoms. Given this, you and your doctor have to weigh the risk/benefit of the biopsy. I hope your doctor understands seronegative Sjogren's. You can print out a copy of the new guidelines.

@lynda12345 I live 8 hours away from specialists 🙁
Unfortunately
So I’m on my own
There are hospitals in Canada in Vancouver and
Toronto
Can I ask you what medication you use for your Sjogrens?

I fortunately was diagnosed some 40 years ago. Schirmers test and other “litmus paper strips” test as well as a lip biopsy and blood panel. I’m followed by a rheumatologist several times a year. The Sjogrens symptoms have been managed.
I’m currently on a low dose methotrexate to keep a spread of two lichen diseases I have.
My current challenge is wondering if Sjogrens is expressing itself some other way. Fortunately I have a rheumatologist appointment Monday.
I’ll look further on foundation website for guidelines mentioned by another commenter.

@lynda12345 I’ve recently been given Rx for dry eye which are prohibitively expensive so do not fill.
I ordered an OTC Miebo-like tear, Evotears, from the UK. At the suggestion of one of these posts I’ve just gotten OTC iVizia. It’s in individual vials. I keep it in the fridge. It has the viscosity of a liquid gel and feels glorious going on.

I will give that a try thank you 😀

@gingerbear22 I find with Sjogrens disease unfortunately this particular disease can affect all organs
🙁 and definitely is a challenge. With me it’s eye, teeth mouth throat feet and hands. I take 2000mg of Tylenol daily use Theoloz Duo eye drops and at night Systane ointment.
Women are more susceptible to this disease.
I wish there was a cure for this disease. If you have any ideas don’t hesitate