← Return to Sjogren’s Syndrome – Introduce yourself and meet others
DiscussionSjogren’s Syndrome – Introduce yourself and meet others
Autoimmune Diseases | Last Active: Dec 9 10:31am | Replies (661)Comment receiving replies
Replies to "@ninette i cannot imagine having a foul smell and taste around me. How distressing for you!..."
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 😉