I don't expect responses, just want to rant a little to those who understand what I am going through....
I have been struggling with a diagnosis for a few years and everything is pointing to Sjogren's but the Rheumies I have seen have all said that it takes years to rule out all other diseases before they will put the label of Sjogren's on me. So I give blood and the test results vary every time (seems like it depends on which laboratory they send them out to.) I have tested positive for SSA but it's a low positive. My primary doctor, neurologist and podiatrist have all tested for SSA & SSB and all their tests come out positive and they all say it points to Sjogren's but the Rheumies (I have been through 3) all are hesitant to call it Sjogrens or Fibro but have tossed the words around. :-[
I have dry eyes (confirmed by Opthamologist), sinuses, airways and mouth are dry. Teeth are miserable (cavities and root canals galore and I take care of them!!!) Brain Fog something fierce some days, painful fatigue some days and never rested! Small fiber neuropathy in my feet, tendonitis in my wrists and inflammation in my joints in my hands.
They put me on plaquenil about 2 1/2 months ago and I am starting to feel a little better (at least when I look back where I was a few months ago.) I have been on Lyrica for a few years with steady increasing doses. I am on Etodolac (Lodine) for arthritis pain and Ambien to be able to get to sleep when I need to. So they are trying to treat the symptoms but it's frustrating without a dx.
Thanks for listening! I just wanted to be able to put it on paper to get it out of my head (yeah, right!)
You are showing a typical Dx challenge. I noticed that you did not mention an RA factor in your blood tests. Fibro should be easy to Dx if you can get the doctor to touch you at 11 of 18 trigger points. Tender points are different.
Bring a list of what you want with you to talk to any doctor you see. Also bring your own advocate with you to see your doctor.
1. Don't panic
2. Remember to breathe
3. Meditation helps
My initial "diagnosis" was "your labs are consistent with Sjogren's Syndrome." Last time I saw my rheumy, we were talking about symptoms and my prior blood work and he explained that if at any point my symptoms start pointing more toward Lupus, then my diagnosis could be changed or it could be both. My ANA was sky high both times it was tested, and the only specific antibodies I tested positive for were SS-A and rheumatoid factor (both of which were extremely high) so for now, we're going with primary Sjogren's. The only thing we know for sure is that I have a connective tissue disease, and we'll treat the symptoms as they appear. I'm ok with that :)
QuoteFibro should be easy to Dx if you can get the doctor to touch you at 11 of 18 trigger points. Tender points are different.
Joe, does that mean that 11 of those tender points have to be painful in order to be diagnosed with fibro? My rheumy did that test with me, and only one of mine hurt...actually, it hurt for days afterwards too! He mentioned fibro might be a possibility but I haven't been diagnosed with it ... I wonder if it's something that might get worse down the road though?
There is a difference between trigger points and tender points. Trigger points are what they are supposed to test. Often they test tender points instead. This test does not help you if you have some of the other diseases.
Thank you for posting replies. Joe S, my RA factor was 11 with anything over 14 as positive. I have found that a particular lab here in town just reports negative or positive for ANA and SSA/SSB and they usually come back as negative but another lab has a range an I am always over their high level for positive. Just frustrating! I just need to be happy that they are treating me for the symptoms. ;)