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
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?
It's all a matter of perspective!
The Following User Says Thank You to quincy For This Useful Post: Boxermama (09-30-2012)
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
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.
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.
The Following User Says Thank You to luca689 For This Useful Post: Boxermama (10-02-2012)
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.
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(
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.
It's all a matter of perspective!
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
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.
It's all a matter of perspective!
The Following User Says Thank You to quincy For This Useful Post: Boxermama (10-16-2012)
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
The following user gives a hug of support to Boxermama: quincy (10-16-2012)
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 tomorrow...at 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.
It's all a matter of perspective!
The Following User Says Thank You to quincy For This Useful Post: Boxermama (10-19-2012)
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.
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!!
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!
It's all a matter of perspective!
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!
The following 2 users give hugs of support to: Boxermama luca689 (11-16-2012), quincy (11-17-2012)
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.
It's all a matter of perspective!