Camikins - new member: symptoms thru to diagnosis

Welcome New Member Checkin
1

Hi - new to the group. Here's my bio, will try to keep reasonably short.

Male - mid 40's.

Symptoms started about 18 to 24 mo's ago. Prior to this, no real health issues.

In sequence:

* Joint pain in both hands. DR tested for rheumatoid arthritis (none in my fam). Elevated ANA, but everything else OK. Decided to wait and see. Had 2nd bout around a yr later. Same thing. Each time lasted about 1 month.

* About a yr ago, I developed GI issues (discomfort & significant changes in bowel habit). My father had colon cancer (although not until mid 70's), but my DR wanted to be safe, ran a ton of tests, all came back OK. Got put on wait list to see gastro dr. Where I live (Canada) wait time is 6 to 8 mo's. Not fun when worrying about colon cancer. Anywho, about 3 months into the wait, I went to Japan on holiday. Was able to see a GI doctor there, get examined, and get endo & colonoscopy all within a week. Came back OK. Finally 5 months after that trip, I got a call from the GI dr here who reviewed the JP doctor's imagine and files, and confirmed all was OK.

* While all this was going on, I developed dry eyes. Very dry. Started to add drops daily. My eye dr commented on this too during a regular eye test. Also eyes became super sensitive to light after sleeping. If I got up during the night to go to the bathroom or get a glass of water and flipped on a light, I'd need to shield my eyes for about a minute as the light was absolutely over powering.

* Randomly then started having discomfort in flank & below right shoulder blade. Family dr did xray - came back OK. Not sure if it's gallbladder.

* All of the above combined, along with elevated ANA & some reading on my own, made me wonder about Sjogren's. Especially the eye thing. I hadn't really put it all together until reading on line for stuff like "GI + elevated ANA + dry eye" and Sjogren's kept coming up. Asked for Rheumatology referral. My dr was a bit reluctant but agreed. He was reluctant only in so far as he is concerned around the potency and side effects of some of the meds prescribed. We had a talk re: pro's and con's.

* Saw rheumatologist in DEC after about a month or two wait. He did a bunch of tests, and made the SJ diagnosis.

* He's ordered an ultrasound to see about the gallbladder / flank & shoulder blade thing. Likely that'll take 2 months or so to do.

Anywho - that's it. As it stands now, my main issues are: very dry eyes, G/I discomfort, and the random flank & right shoulder blade discomfort.

I can understand why it typically takes a long time to be diagnosed. I was lucky that I was able to get to a GI doctor quickly b/c of a trip to Japan, and that I was fortunate to put a few pieces together. Finally - I think b/c I'd never had any health issues before this happened, and had been seeing the same dr for 20 yrs, he was more attentive to a series of 'unrelated' issues all cropping up within about a yr or two.

Main concerns & worries are:

* What if the pains I feel in random parts of my body are not SJ, but something worse (growths etc).

* What if SJ progresses and gets worse, & I can't work or look after family (I have an 8 yr old) of if the SJ becomes very bad and I have to deal with chronic pain etc.

2

It’s really hard when you’ve just been diagnosed. We tend to read up on the disease, and the stories that you see can be quite scary. If you are having systemic problems, it is reasonable to be on systemic meds. As time goes on, you will have a better idea as to how your disease is progressing, or not progressing, as the case may be.

You have an inflammatory disease, so the likelihood is that most of what is going on is based in inflammation. That said, I have a general rule for myself. Keep in mind that Sjögren’s is secondary to psoriatic arthritis for me. I will ride out anything for at least a week or so, knowing that most things will pass in that time. If things are getting worse or are unbearable I clearly break that rule.
As an example, recently I was having really horrendous enthesitis on one foot (inflammation where tendon inserts into bone). I waited a week, and it started to lessen, at which point I knew that I was over the hump.

3

Sjogren's can have a lot of painful joint symptoms as well as muscle-like "aches and pains" symptoms.

Really take good care of yourself. Good food, organic. Lots of exercise when you're up to it.

4

Thanks - will do. I'm having an ultrasound later this month - to have a look @ my gallbladder & liver, to see if there's any issues that are causing the discomfort below the right shoulder blade. And yes - always a good idea to eat well, and exercise, especially when there's a chronic health issue percolating....

5

Has pancreatitis ever been mentioned? Dr’s will dismiss this because it is typically caused by alcoholism.and they don’t know about inflammatory disease. The Dr must do the test for pancreatitis as soon as you start having a flare up, that’s when the levels are highest.