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Boxermama 09-29-2012 11:07 AM

Primary autoimmune ? Secondary Sjogren's??

Looking for some answers and quite confused by docs. Beginning of last month I went to the GP because I could feel something pressing under my armpit and under my jaw on left side. GP dismissed it, she couldn't feel anything. Went back four days later with lump under jaw and white spots on tonsils. She said under jaw was clogged salivary gland and I had tonsilitis so she gave me antibiotic. White spots went away within two days but then I felt pressure on the front of my throat and salivary gland still enlarged after sucking on sour candies and using warm compresses. GP gives referral to ENT.

ENT wants to know where tests are, I say no tests just referred. He examines and asks about dry eyes and dry mouth. I tell him I have complained about eyes for last couple of years buy they did test only slightly dry 2 years ago and to the best of my knowlege mouth dryness became obvious only four months ago and I didn't realize it was medical. (I often complain of not enough air and I am told it's anxiety.) ENT says it Sjogren's and he will send me for bloodwork and come back in a week and continue with warm compresses. Next week bloods are negative SSA & SSB and he says it's secondary Sjogren's, primary autoimmune undiagnosed. I tell him I still have weird pressure on front of throat and slight swallowing issue. He says he will take a look. He saw slight inflamation in vocal chords but says it's most likely from reflux. Tell him that my reflux is under control and I don't think that's it. He says go back to GP for tests. She refers to Rheumatologist who can't see me until December. So now I have lump under jaw and this of and on pressure/swallowing thing with no real answers.

For the past 4-5 months I have been complaining to GP about extreme tiredness and she says it's part of fibro. Also I have been complaining of some mental confuscion and panic/anxiety for the last year....also fibro she says. I'm kind of angry and wondering if she is missing something. Any thoughts would be appreciated:)

quincy 09-29-2012 11:38 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Hi..initially, i'd suggest you check out the autoimmune section on this site and see if there are other postings that can give you a bit more insight and then ask more questions there.

Seeing a rheumatologist is probably your first bet regarding certain blood testing, etc.

Keep copies of ALL your test results (blood/x-rays/scans,etc), and if you don't have them, ask your GP for copies. You can do further research and compile questions, etc regarding some testing, results, next steps, etc.

You're in a difficult place. Autoimmune disorders are very difficult to diagnose/pinpoint. if you do have secondary Sjogren's, you still need to heed the processes of possible medications and "remedies" that can help lessen some of your discomfort.

If the ENT checked out your throat and you have redness around the larynx that's classic with reflux, it might not be completely under control...that means that the med you're taking isn't quite enough to lower the acidic level that's causing that irritation. But, if it's different irritation pattern, the reasons should be sought.

Have you seen an allergist as well?

What medications are you taking...including OTC?

Have you had ultrasound done of the lump/nect and thyroid?

Who diagnosed you with Fibro?


Boxermama 09-30-2012 09:18 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Thanks for the response q. I have not seen an allergist and my fibro was diagnosed in 2003 by rheumatologist. My GP has been following it with me and it's never been real bad. I started on Celebrex and was on that for about 4-5 years then when it was taken of the market briefly I was switched to Nortriptylin.

My meds are Nortriptylin 50mg at bedtime
Omeprazole 20mg
Camila .35
B complex

Also I am Thal minor so iron is always low but I am told that it is of no significance because that's normal fo me. Also have moderate hyatal hernia and diverticulosis.

No scans have been done of my neck, thyroid or enlarged salivry gland. ENT mentioned doing Thyroid scan then said I should go back to GP and have her do some testing that he probably isn't the best one to order that but if the swollen salivary gland still bothered me and was still there in 3 months to come back to him and he would do the lip biopsy. He also mentioned that I could take Prilosec in addition to the omeprazole (I thought this was the same thing?) GP had already referred me to the Rheumatologist that can't see me until December. I may try to get an appointment with the one that diagnosed the Fibro instead of this new one that she recommended. At one point I did think maybe I should as GP for thyroid testing because I am always so cold which in turn makes me very achey and I'm pretty sure that's what causes all the stomach issues but I thought she might freak if I was trying to investigate something other than the Fibro and I really need to avoid any confrontation because at this point I just feel so lousy I am overly weepy/sensative about everything.

Thanks for your thoughts:)

luca689 10-01-2012 09:49 AM

Re: Primary autoimmune ? Secondary Sjogren's??
I have secondary Sjogren's to limited systemic scleroderma. Secondary is associated with other autoimmune conditions such as lupus, rheumatoid arthritis, vasculitis, undifferentiated connective tissue disease, etc. I was tested for the antibodies during my primary diagnosis and came up negative at that time. Over the years, I have developed the secondary form and, at least for folks with my disease, they don't bother with any more labs or lip biopsies and just treat the disease. You need to def take care of that reflux, because it is not under control. If I were you, I would get something in writing from your ENT with his conclusion that you have an autoimmune process going on. Ask at your next rheumy or gp appointment what is the plan to rule this in or out. Fibro, to my knowledge and I'm only a patient, isn't associated with Sjogren's, primary or secondary. I can tell you that the other AI diseases that are associated with secondary Sjogren's, even UCTD, can make you plenty exhausted, sore, foggy, and anxious and depressed in their own right.

Boxermama 10-02-2012 06:59 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Thanks, I am going to Reumy in two weeks and will see what she makes of this from what I can tell her. When I called GP office to see if referral was done she said she just wants me to go to Rheumy for evaluation of the Sjogren's. I don't think she is concerned with any "primary" autoimmune. In the past the Rheumy was very thorough so I am hoping this will still be the case and after I have some answers I will try to find a different GP. I can see from this it just won't work with her any more.

I still don't think there is an issue with the reflux but who knows. I will just try to relax and not stress out for the next two weeks, of course I know this is easier said than done.;)

quincy 10-03-2012 11:20 AM

Re: Primary autoimmune ? Secondary Sjogren's??
If the rheumy was the one you saw in the past, it sounds as though you'll at least have more indepth testing done....which is good.

yeah, it sucks when a GP isn't supportive...hope you find another one who is.

I hope you have your vitamin D checked as well. Why are you just on magnesium and not calcium?

Definitely let us know how the appointment goes.


Boxermama 10-04-2012 05:53 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Thanks q. I started taking magnesium a few months ago for pains in my legs, GP said to take it. I don't think it does anything, still have same pains. I'm not sure why I'm not taking calcium anymore, I was taking at one time and then stopped. Maybe because it's in the multi?

From what I read I thought this was an extremely slow moving condition. It just seem that since the lump arrived, I have been progressively feeling worse. I used to fitness walk three miles each morning, when I started feeling ill in April GP advised me to cut back and said I was probably over doing it for the Fibro. I have cut back to 2 miles at a much reduced intensity and can barely get through it. For the last few days I have become nausaus in the morning and at various times throughout the day. Also, I am very swollen in the morning and then by about 6 pm I am back to normal and my rings are very loose as usual. This so reminds me of mono. I have had mono twice and I remember extreme exhaustion, swollen glands, nausau and vomitting. I don't know why GP didn't do any tests, maybe it could be mono. I don't feel like even if I go back to her now she will do anything. This is just so crazy:0(

quincy 10-04-2012 09:28 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Oh wow, you've been through way too much regarding health history for the GP to not check and recheck. Definitely thorough testing should be a must, especially when a person has multiple issues happening.

It's good you're seeing the rheumatologist soon...make a huge list!

If you have test results of your past visits with your rheumy, it would be good to do a bit of research before you go for the appt.


Boxermama 10-13-2012 08:18 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Wow! So happy, may have found really good new Dr. yesterday! Last week when I thought this might be mono and my Dr. was on vacation I finally decided to switch primary care Dr. I thought I was making the appt with the location of the practice that is 5 minutes from my house but somehow I wound up with the appt at the location near my work (only 20 mins away, this may have been fate since this Dr. is at main location only) So the new practice is affiliated with the local university hospital system and so is my ENT, GYN and Opthomologist so I thought why not.

She was so thorough and is running 7 blood tests to get to the bottom of this. Also she has background in OB/GYN and is concerned that I get my period every two weeks most times, so one of the bood tests are regular hormone tests. The others are for EBV, Thyroid, RA, Lupus, arthritis and Lymes.

However, she was not happy with the lump and that no scan or biopsy has been done yet. I told her I was going to Rheum on Tuesday to have the Sjogren's evaluated and she said that if the Rheum does not order scan/biopsy immediately she will and told me to come back in a week to discuss the bloodwork. She did seem a little skeptical about the lump being a salivary gland (that makes me a little worried). I am so relieved and feel I can really trust her:)

quincy 10-15-2012 02:40 PM

Re: Primary autoimmune ? Secondary Sjogren's??
Hi..sorry for the late reply. Good to hear you have a new doctor and that you're getting more testing done. I totally agree with her concern about the lump, hopefully, she'll send you for a scan/etc sooner than later..don't know why she'd wait for the Rheumy to set that up. Regardless, it will be dealt with, and that's a good thing.

Since your periods are wonky and you have a lump in your neck, could it be thyroid related? Your blood tests might show a direction of further investigation.

Sounds as though you're in a good place of medical care. Please let me know how your appt tomorrow goes with the Rheumy.


Boxermama 10-16-2012 03:23 PM

Re: Primary autoimmune ? Secondary Sjogren's??
So back from the Rheumy and now I remember why I stopped going to her...she's totally wacky. So basically she says ENT doesn't know what he is talking about, there is no Sjogren's because the bloodwork is negative and also she is not ordering a neck scan because she does not feel the lump. Right there I knew this was not going to go well. They called the lab and got the preliminary results of the blood test new pc dr. ordered and she said they all show negative for anything. No recent EBV, no thyroid problems, no arthritis or RA. So she said she will do her part and rule out a few more things but she is thinking it is just the Fibro and the medication probably needs to be changed. She ordered an ANA which I know was ordered on the original bloodwork and probably wasn't in yet. She also gave me a script for 13 other tests and told me to come back in 2 weeks.

I think I will just show the script to the new pc dr. on Thursday and let her decide what should be done or if I should go and have these tests. The really interesting thing is today the lump is definitely there and I have the abnormal swallowing again and can feel something is tighter on the left side of my neck than the right. Also have terrible leg pains today.

Oh well, I kind of knew this wasn't going to be easy and really wasn't expecting a great deal from today's visit:)

quincy 10-17-2012 12:03 AM

Re: Primary autoimmune ? Secondary Sjogren's??
Sheesh, that would have been quite a let down, especially because of her attitude and that she couldn't feel the lump.

It seems as though your new doc will be your best lead to getting things sorted out. It's difficult when someone has a multitude of issues...I truly think some doctors are just not interested after a certain point. OR....they only rely on one aspect of testing. There are always false negs and false positives...but usually they lead to further testing at the very least.

Your follow-up appointment with the new doc will be least you won't have to wait too much longer.

Hope she has more to add to the mix in a forward direction with a neck scan or CT or whatever else will help show what's going on.

I appreciate the updates.

Boxermama 10-19-2012 05:06 PM

Re: Primary autoimmune ? Secondary Sjogren's??
So yesterday I went back to the new pc dr. and told her about the Rheumy and she said no problem, we won't use her, but go for the bloodwork the Rheumy ordered and have the results sent to her also and she sent me for the ultrasound of my neck today. I should have the results in 3 days and I have my next appointment to go over the results on Tuesday.

She said she believes that the ENT is correct with the Sjogren's dx but since it often comes with something else, she wants the additional bloodwork done. I am really happy with her and I feel like she is "on the ball".

I'm going to try to read up on Sjogren's. I have to say I'm not feeling too bad the last few days. I realize I need to use the eyedrops before my eyes start bothering me and sip more water and I'm just a little more tired and achey but nothing extreme. I take a few advil and become a couch potato by 8:30 each evening, it could be a lot worse. I've had a few days over the last 6-7 weeks that were really terrible so this isn't so bad. I do wonder how and when this started. I know I have been having the problem with my eyes for over 2 years but I don't think the extreme dry mouth started until this past April or that's when I really noticed it.

Thanks for listening;)

quincy 11-10-2012 12:40 PM

Re: Primary autoimmune ? Secondary Sjogren's??
Hi...Thinking of you since the recent hurricane Sandy.
I'd forgotten you're from that area....
Hoping you're doing OK and that no extreme devastation has come upon you and your family.


Boxermama 11-11-2012 05:32 PM

Re: Primary autoimmune ? Secondary Sjogren's??
Hi, thanks...we weathered the hurricane and nor'easter without more than just a loss of power twice but only for a few hours each time thankfully. Unfortunately, there are people within just a few miles from us that were not as lucky. Really puts a lot of things in perspective.

So I also posted some results from the bloodwoork the rheumy ordered and still have no answers :( but from reading the posts from others I realize that I need to not get crazy over each test because this could go on for a long time. But with the recent results (positive ana 1:320 with nucleolar pattern and high c-reactive protein) the rheumy thinks there may be something to watch for. Oh, she also felt the lump and discussed some options for treating the Sjogren's symptoms. I 'm not sure how I feel about her still, but she is doing more tests to double check the accuracy of the ana and some additional tests as well so I we will see how it goes. She is also sending me back to pcp to have heart and lungs checked. I opted to not change or add any meds yet. I still wish my thyroid would be more thoroughly tested, but I can't it done as no dr thinks its necessary. I did read that sjogren's often comes with thyroid and my scan did show 3 small nodules, but that's just my thinking, oh well.

Any thoughts or input would be greatly appreciated!!

Thanks :)

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