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Sjögren's Syndrome Message Board
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Old 11-14-2012, 12:56 PM   #16
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Re: Primary autoimmune ? Secondary Sjogren's??

Hi...good to hear nothing serious happened in your immediate area.

I think the decision for you to say no meds at this time is a good one, especially since it's iffy regarding diagnosis.

I don't know what meds would help with Sjogren's? More of symptomatic help? What were the options that the doc offered?

I would push for you to be referred to an endocrinologist who would hopefully take your concerns more seriously and do more indepth testing. Especially to take a serious baseline regarding the growths and then retest again.

I have one nodule in my thyroid that's been ultrasounded twice...no change, so I haven't had another in a long while.

From the reading I'm doing...there's a lot of confusion regarding the blood testing results like yours. There seems to be some differentiation between Lupus and Sjogren's ...but it's under the same umbrella somehow.

Absolutely push for the endocrinologist...it dismays me that you haven't yet had an ultrasound.

Well Watson....the game's afoot!
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Old 11-15-2012, 05:13 PM   #17
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Re: Primary autoimmune ? Secondary Sjogren's??

Hi,

Well more confused than ever but not going to freak out! So yesterday I had to go to PCP and review bloodwork Rheumy ran and request tests Rheumy wants to rule out any heart/lung involvement. I am actually ok with this because I do have slight mitral valve leakage and lately I have been complaining of shortness of breath but old PCP told me it was anxiety. So I will have a chest xray, echocardiagram and I had lung function test with fair results.

PCP seems more concernd about posite ANA and pattern than Rheumy. She is also concerned that my white blood count it is now low. I also discussed with her something that was in the back of my head for a while now. When I went to the ENT it was for the enlarged salivary gland and some pressure that I was feeling on the front of my throat that I thought was affecting my swallowing. I felt like my swallowing was kind of lopsided. The ENT told me that the pressure and the swallowing were most likely not connected which I found odd because they seemed to arrive at roughly the same time. He told me that my reflux was the cause of the pressure because that was causing inflamation of the larynx. He also told me that I was not on high enough dose of omeprazole, that I was not taking it correctly and that it is not uncommon to become unaware of the reflux because of scarring or it was while sleeping. I really didn't think he was correct but last week I did start taking two pills per day as he suggested and I did see an improvement in the pressure, it's almost gone but swallowing issue still there. So he was correct. So now I am wondering if when he told me that the Sjogren's was secondary and there was an undiagnosed "primary" maybe he saw something obvious that he did not mention. I have read that quite a few of these autoimmune things can cause a problem with the esophagus so I guess an ENT sees alot of autoimmune conditions. I have also read that some times the primary condition will mask the results of the SSA/SSB and it will show negative. So maybe he really knows his stuff. The PCP has alot of confidence in him, more than she has in the Rheumy. Maybe this is because the PCP and ENT are from the same teaching hospital. As this unfolds I may inquire about a second opinion from the Rheumies at the teaching hospital. I know the wait t see them is a few months but it may be worth it. I guess we will see what happens with the next round of tests.

Sorry for the rambling, but I know that if you have been at this a while, you must have read an enormous amount of material as well as having a wealth of personal knowlege so thanks for looking in on my situation, I really appreciate it!

Bless you!

 
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Old 11-17-2012, 11:52 AM   #18
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Re: Primary autoimmune ? Secondary Sjogren's??

Hi Boxermama. Hmm, I don't see you rambling..lol. 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 anxiety...lol. 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,
q
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Last edited by quincy; 11-17-2012 at 11:53 AM.

 
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