Sjogren’s Syndrome – Introduce yourself and meet others

It's a long story. In short: in the last 7 years I had Cauda Equina Syndrome (2015), a fractured hip (2016), a spinal stroke (2018; for a while I was paralysed from the chest down)), 2 fractured vertebrae and a huge infection at L2 due to part of the facet joint crumbling (probably happened during the fall that also caused my fractured hip, but only discovered late last year). And in the last few years, also dry eyes, nose, mouth, throat...well, basically everything. Process for the Sjogrens diagnosis is still ongoing due to covid (everything takes longer now)- the only thing I still need is the salivary gland biopsy (the CT of the gland showed a disturbed pattern). Sicca has been diagnosed by ENT doctor. This foul small in my nose and taste in mouth started after my own covid infection (March 2020)- could be related, or maybe not. Had tests for covid and diabetes (negative). Nothing wrong with my sinuses either and I have the feeling it's coming from my stomach acid reflux probably due to gastroparesis (apparently some people with Sjogrens get that). Also, because I don't have much saliva, the stomach acid makes a comeback (haha) undiluted, so that might very well be the reason. Starting to change my diet (less coffee and fizzy drinks, less fatty or spicy foods, eat smaller portions more often) and take antacids (Rennie). How do I cope? Some days better than others. Having work that I do with passion helps a lot to distract me from the nerve pain I have since the neurological stuff happened (but not from the foul smell, regretfully) and I have a lovely husband who helps me as much as he can. The thing I regret most is that I can't walk on my own again since I lost my balance due to the stroke. But I have a very cool Alinker walking bike (pictured) and Nordic sticks for short distances. I guess I just take it day by day and try not to panic too much if a new symptom appears. I'm 68 and plan to live for at least 20 years more 😉

Lab tests for Sjögren’s can be negative in 20% of people who do have Sjögren’s. So you cannot dismiss the possibility of having Sjögren’s. I tested negative but was positive through a lip biopsy.

I'm not dismissing it. I want badly to see the rheumatologist. The one my sinus doctor referred me too can't see me until Feb I really would hate to wait that long. I see new pcp on the 30th, same city, different hospital hoping she can refer me to another one who could possibly see me sooner. I'm dealing with multiple illness and it seems that specialist in general have long wait lists.

I’m sorry to hear that you have to wait so long to see specialists.

wow. you sound like me. i have more specialist appointments. several issues healthwise i need to get figured out. its hard because of course there is a wait to see these specialists and its hard .i just noticed the swollen glands/neck the other day. what is the "Evoxac"? i never heard of it. i am trying to do what i can to get by for now. my sinus dr. who i saw last week, at that time i was still trying to get a hold of the rheumotologist he referred me to so he ordered some autoimmune bloodwork. all 4 came back negetive one someone suggested to me its a sjorgens test i guess, ana it was negetive as was Rheumatoid igg, sedimentation Rate (ESR) and c- reactive protein, all negetive. so i know there is probobly more i need done but im baffled whyi have all these symptoms the sore throat with the swollen neck/ throat is the worst.

Hello Eileen, Evoxac is a medication that helps your saliva glands maintain moisture in your mouth. The generic is Cevimeline capsule. See if you can google it or look it up on Medscape or Drugs.com. You can test negative on all the Sjogren's tests which are pretty much the same ones for rheumatoid arthritis which is called sero-negative rheumatoid arthritis when all the tests are negative but all the symptoms are present. (With all the other medical issues I have, my dear rheumatologist has had the rheumatology department in our health system eliminated therefore his job. What's going on with our medical system?)

Hello again, My rheumatologist or my dentist have both given me a prescription for it. The dentist has supplied when I didn't have a rheumy since a dry mouth promotes tooth decay. My PCP is worthless and I'm hoping when the dust settles down with the current shakeup, that I can switch to a far better PCP (if I can find one accepting new patients.). Present doc wouldn't be helpful at all when it comes to rheumatology knowledge and proper care.

Does anyone have earaches from Sjogrens?

Thank you for the resources.
Here are the links I mentioned in a previous post: Sjogren's Foundation: https://www.sjogrens.org/
Sjogren's Advocate: https://www.sjogrensadvocate.com