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Sjogren's Syndrome
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Posted 4/22/2014 7:54 AM (GMT 0)
Hi all,

My name is Ken, 35 and I have been recently diagnosed with SS about 5 months ago.

Already joined the BSSA for a more localized support, but wanted to also branch out to the wider community.

Been experiencing symptoms since my early teens, but as SS is so varied, each symptom was treated separately.

Currently on Hydroxychloroquine and for pain relief I'm on Naproxen and Codine.

Anyway, looking forward to networking/sharing experiences with everyone :)

-Ken
Posted 4/22/2014 12:12 PM (GMT 0)
Hi Ken
I am in the same boat having just recently been diagnosed with primary SS. Fortunately my symptoms only began about 2 years ago and it was dry mouth initially and was my dentist that sent me further as I may have struggled for years not knowing what was wrong. I have had eye plugs inserted which have helped with my dryness in eyes. For past year I was just generally feeling below par and didn't know why. The fatigue and weakness was what really got to me and I thought all was in my head. My bloods all negative and at the moment I am waiting app. with Rheum. Not sure where I go from there but will wait and see.
Take care
Reme
Posted 4/22/2014 12:43 PM (GMT 0)
Hi Reme,

I'm still undergoing tests/assessment to see if my SS is primary or secondary, as my bloods (I've had two or three sets of bloods test already, going for my next set next month) have all come back all over the place (negative, positive, increased and decreased). I've also had x-rays, ultra-sounds, eye exams, a full body check and some sort of fluid flushed thru my glands to see why they swell like chipmunks.

While it's not nice to hear about the discomfort of others, it is nice to hear about what others have been thru. I was starting to think that I was going crazy - tired all the time, mysterious aches & pains that would move around (some days being bearable, other days practically unable to move), the constant need to drink all the time (yet dry all the time), etc... I'm glad of my diagnoses and the start of my treatment, I just want to know if there is anything else "wrong" with me - but know that it takes time to assess :(
Posted 4/22/2014 5:24 PM (GMT 0)
Hi Ken - welcome.  Sorry to hear you are having the symptoms you describe.  Glad to hear however that they have narrowed it down or at least are starting to.  Certainly sounds like "typical" symptoms of sjogrens.  I was diagnosed a year ago but had been steadily declining health-wise for sometime before I was able to get a dr who believed in me enough to do an autoimmune panel and low and behold sjogrens reared its ugly head.  I was put on plaquenil a year ago and started to notice changes within 6 months of being on it.  Improvement in fatigue and aches and pains. 

Hoping your journey brings to a place where you can feel peace and comfortable.

Keep us posted.

 

Posted 4/23/2014 5:41 AM (GMT 0)
Thanks, hopefully will have more news next month on my next appointment.
Posted 7/3/2014 7:51 PM (GMT 0)
I too have been experiencing symptoms since my early teens. I'm 38, and only been diagnosed for a year. I really do blame myself because I'm too stubborn and I doubt myself to much. I would blame this and that for my issues not that something could be wrong with me.
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