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Old 11-17-2012, 12:52 PM   #18
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Location: Winnipeg, Canada
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Re: Primary autoimmune ? Secondary Sjogren's??

Hi Boxermama. Hmm, I don't see you You have a lot of information and complicated issues happening at the same time. I appreciate how you're able to organise it all.

I don't have the wealth of information you might believe I have, but my sister has and my MIL had Sjogren's. I suspect that I might have it based on the dryess of my eyes and mouth, but both could be med-related or autoimmune of non-specific nature. I've come to my situation quite honestly with health issues and not being of an obvious positive on a lot of things...more like toeing the line or just over, etc. It's been a frustrating process. One ENT doctor told me that, while there are becoming more and more people like me, they really don't know what to do with us since we don't fit into the established criteria of measurement/diagnosis. Some see that as a negative, I saw it as confirmation that there are things happening. It actually eased my anxiety about it.

I can relate you through many issues including the mitral valve regurgitation (murmur) and had an echo to confirm and cross off any other issues. Seems it's pretty straight forward, mild and not serious.

I'm going to go through my blood tests to see if I had ANA done as well as SSA/SSB...and let you know (from my rheumy appt)..

The shortness of breath can definitely be from reflux and anxiety, but it's best to do appropriate testing before assuming it is. I have asthma, reflux and sigh. My asthma is more intrinsic than extrinsic, and during worsening symptoms I've doubled the Zantac and have had improvement.

When you saw the ENT...did he do the scope down the nose into your throat?

Did you have a thyroid scan? and I still think you need to push for the ultrasound even for HUGE piece of mind.

Thanks for sharing...I do wish I had a lot more to offer regarding what it all means, but I'm learning so much from your experience and YOUR knowledge and situation. You're you're doing your homework creating questions for your doctors. it's reassuring that you are in the process, but from what I read, it's difficult for some to pinpoint diagnosis.

Talk soon,
It's all a matter of perspective!
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Last edited by quincy; 11-17-2012 at 12:53 PM.