Do I even have Sjogren's? Misdiagnosed possibly?

[SjoGirl]

These diseases are crazy frustrating. While I agree with Carolina on some level, I went to an academic medical center for a second opinion and came away more confused and frustrated (and my PCP was none too happy about the lack of specificity in their finding).

Agree with much of the others items mentioned. Keep in mind as well that AIs can take years to, as my rheumy says, declare themselves. You can have overlapping diseases and many of us have issues in addition to AIs (for example I have degenerative disc disease).

I actually gave up on a name, though have been dxed with SjS, autoimmune anemia and Raynauds. Why? Because the only "treatment" is Plaquenil and others described. Even my hematologist was frustrated this week when I told her about new symptoms. She said there is unfortunately not much that can be done for us.

Keep fighting though, it's good to do in a positive way. And remember, you have lots of good support here.

[slccom]

We are crazy-shaped pegs, and doctors are frantically trying to figure out what pigeonhole to put us into. In the end, it often doesn't matter where they put us as long as they try to treat us.

Sharon

[Carolina]

AMEN to quietdynamics.

The best way to help ourselves is to find ways to help others.

On line and F2F in RL.

Hugs

Elaine

[warmwaters]

Either positive SSA or SSB can be indicative of Sjogrens. Either can also be indicative of Lupus. SS-B can also be an indicator of RA.

My interpretation, based on Mayo Clinic http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82403 criteria.

A strict diagnosis of Sjogren's (one used to qualify patients for clinical trials)  is here
https://www.sjogrens.org/home/research-programs/healthcare-providers/diagnosis-criteria.  It is worth keeping in minding that doctors don't use this as the basis for whether they will treat you - it is a very detail set of criteria for research purposes. Among other things, you must have either a positive SS-A or a positive SS-B.


But the real trick here is that if you have either of these positive ... SOMETHING is going on!

I know how frustrating it is to not have a clear name and a clear plan, but as several others have said, that can be the nature of autoimmune disorders.

I had almost the opposite path - after a seemingly quick onset when I was close to 50, I was diagnosed fairly quickly with Sjogren's (like in 2 months, which is really quick for Sjogren's).  Five years later, I have also had the following diagnoses... depending on which doctor I've seen: undifferentiated connective disorder, mixed connective tissue disorder, spondlyoarthritis, asthma, fibromyalgia, and "unspecified autoimmune issues". Most of these supposedly exist with the Sjogren's which is of course entirely possible.

Part of the problem that the definitions are descriptive to a large degree. The fibromyalgia diagnosis was particularly interesting. I saw a different rheumy due to complicated set of circumstances, and she took the time to do all the pressure points.  She said - you've got fibromyalgia.  I took this info back to my regularly rheumy, and she pointed out that fibromylagia is only diagnosed if there is no other reason for the pain - but I have reasons for the pain, as I have an autoimmune problem that causes pain at tendon attachment points.

So the focus needs to be on dealing with the symptoms, preventing any further damage, and encouraging research so that some day there will be a better understanding of how these crazy autoimmune disorders are related.

[deniselb]

I thought the "SS" in SSA and SSB stood for Sjogren's Syndrome. My rheumy refers to them as Sjogren's antibodies. I don't know where you saw that SSA is more likely to be lupus, but I'm sure it's not true. Although people with other diseases including lupus have these antibodies, both SSA and SSB are strongly associated with Sjogren's.

[IllnDontWantAPill]

Hi all,

Thanks for the responses. My ANA was abnormal (positive) and my SSA was flagged at 8.0 My Anti DNA-DS or whatever it's called was fine. My SSB was fine. RA Factor was fine, SLE was fine. So I guess it IS likely I have Sjogren's then? I appreciate all the advice and responses. I don't currently have a Rheumatologist and haven't since December of 2012. My doctor laughed at my disability (Tourette Syndrome) and I'm lucky I didn't punch her lights out. Then the practice decided to ban me. It's been REALLY hard to get over this issue as I lost 4 doctors. It was the best thing that could have happened to me but it's not easy finding 4 doctors. I was established there and now have a forever long wait to get into a new one. There's only 7-8 in town with a population of over 2 million people...the wait is horrendous I hear. I definitely WILL and NEED to see a new rheumy..when I can get motivated to call places and wait 3-5 months to get in! That in itself is another challenge..having the energy to go once the 5 month wait passes!

[IllnDontWantAPill]

Amanda,

Thank you. She's not going to win. It's not so much fear of another doctor laughing at me again as 1. she's the only doctor who has ever done that and 2. it's more the red tape anyone would have to go through to get established. I guess depression is a part of Sjogren's? It's so hard to get motivated to do ANYTHING. Peeing and eating is an effort. Smoking is an effort, driving is an effort and so on. I'm sure you understand and feel the same way? I'm going to call Touro University and make an appt. I have so many unanswered questions because of what that doctor did. Funny thing is, I get the mail tonight and there's a letter from the practice that banned me...telling me they are so sorry to announce Dr. April Marquardt has moved out of state with her family and they know it saddens me Bahahahaha! They have no idea how much I'm NOT sad. It would be doing mankind a favor if she were dead. THEY are going to be sad when I call them and rip them an a$$h0le the size of Texas telling them I don't give a s@#$ about April Marc*** (I have my own name for her) which I can't say on here. I will tell them to go F themselves and do not send me correspondence or I'll consider it harassment since I have a letter stating they are banning me from the practice dating back to January of the new year. I'll also ask them what my current balance is...to the penny and then I'm going to say "thanks for that because ...YOU'RE NOT GETTING IT BECAUSE I'M GOING BANKRUPT. Now go F yourself." lol I can't wait for this phone call. Karma is a B!

Anyway the tourette's is very hard to deal with but most places are very good about accommodating me (they BETTER, I'm DISABLED.) If they don't I threaten them with a lawsuit or medical board report if they can't accommodate a disabled person who's covered by the ADA. They shape right up. They either take me into an unused room, conference room, or if no rooms are available, I sit in the car and they will call me on my cell when my turn is up and I run right in. Kinda sucks living in Las Vegas because you can't sit in the car without the AC so I waste a lot of gas lol. But they usually don't give me any problems at all. Word soup...I LOVE THAT Amanda! That's a perfect way to describe the jibber jabber and stuttering that comes out of my mouth. I HATE when a doctor walks in and says "what's going on today?" I don't even know what to say and I feel stupid!

I guess it's pretty clear I have Sjogren's then with the consistently abnormal lab work. So far my SSA has never been in range since it's been OUT. That helps in getting a clearer picture before the doctor has a chance to think of "oh it's just in your head." Nothing makes me want to commit murder more than that lol. I'm sick and suffering and you think it's in my head and why? Because it's the easy way out and no work is involved for them. It's in your head, here's some Xanax...F/U in 2 weeks...bye...next patient please!

Thanks for your concern and willingness to help me try to overcome this tourette/doctor barrier. It's so good to know this feeling stupid stuff is not just something I'm dealing with. Apparently a lot of us have the memory fog, brain dust, all that good stuff lol.

Hugs,
Gary

[Carolina]

Advice for visiting a doctor:

1.  Write your complete history in a chart form:  year, diagnosis, treatments, symptoms, life disruptions, complications, allergies.

2.  Write a list of your concerns IN ORDER of importance.

3.  Take notes.

4.  Take someone with you who has your lists, your concerns, and will listen and take notes.  Someone ON YOUR SIDE.  (I've taken someone NOT on my side, BAD IDEA).

5.  REMEMBER:  a doctor is a very sensitive computer in many ways, programmed with information and ways to cross reference information, and with possible solutions/tests/additional requests for data.  You must input the right additional information and ask the right questions to use this computer. 

Finally, the average doctor in private practice has mostly run of the mill patients.  80% of visits to primary care physicians have a strong mental health component, so don't be surprised if your doctors thinks you have a mental health issue.   A good doctor knows it is never  either/or with anything, but then, good doctors take time to find.

6.  If you are angry with a doctor, frustrated, emotional, or have any other strong negative feelings, I advise finding another doctor to treat you.  My husband FIRED a surgeon from his bed in the hospital post surgery.  I have fired doctors in the office during a visit.   This relation is very important, and cannot be optimum if there is not trust.

Hugs

Elaine

[Velcro]

I tested negative for SSA and Positive for SSB two years ago. Now I'm testing negative on both. I also had a positive ANA during that time, but not now.  My biopsy also showed Linear Morphea Scleroderma of my skin and muscle on my left arm that was deteriorating.  Now I'm throwing a high ACE enzyme, which is only indicative of Sarcoidosis, but I don't have any of the typical Sarcoid symptoms.

I said all that to say, this is my personal opinion, I think so many autoimmunes mimic and overlap with each other, that blood work doesn't always show the entire picture.  I think in my case, whatever was flaring at the moment they drew blood is what showed.  Yes, I understand wanting a name of the disease because it's so hard on me when people ask to go....well it's like this...they really don't know and are working on it still.  People seemed to go, "Oh, well, Oh".  I think it makes it easier all the way around to be able to say to them and myself, I have XXXXXXX or even I have XXXXX & XXXXXX & XXXXXXX.  Plus, I would feel mentally better knowing I was taking the correct medicine for the correct thing.  Of course like others have said, many of the medicines are the same for the diseases.  My treatment for Linear Morphea, Sjogrens and Sarcoidosis would literally be the same.  The only exception is the dry eyes and mouth.

[mambo]

I think some of you are thinking that diagnosis is always clear-cut.  You can't with Sjogren's or Lupus.  You gotta understand that this is a progressive disease, with various antibodies turning positive at various times and sometimes in sequential order.  Depends where you are in that progression.  And the order usually matches the onset of symptoms or complications.  So if you don't have such symptoms or complications, it's likely that you're not yet positive.  Will you in the future?  If the disease progresses, yes.

If you're SS-A/Ro and ANA+, then it's possible that you could be progressing toward lupus: some such people eventually get diagnosed with lupus.  If you're SS-B/La, the probability is lower and chances are that you may stay Sjogren's.  But I don't know if it's any better, since you're more susceptible for Non-Hodgkin's Lymphoma, especially if you have low C3 or C4.  Fatality due specifically to Sjogren's before reaching senior status is due, in many cases, to lymphoma.

Someone must have already posted the Melissa Arbuckle article. 

http://www.nejm.org/doi/full/10.1056/NEJMoa021933

It chronicles the sequential order of antibodies and the appearance of symptoms and diagnoses in SLE.  To summarize, the order is something like this:

(1) SS-A/Ro or SS-B/LA, seropositive 3 years before symptoms show.  I would have thought ANA, but apparently not.
(2) Then, ANA and anti phospholipids, seropositive 2.25 years before symptoms show
(3) Then, Anti DS-DNA, 1.25 years before symptoms
(4) Then Smith and NRP, within 6 months of appearance of symptoms, which also makes sense, since these could involve kidney involvement and the Smith being much more serious.

This doesn't mean all such antibodies will turn positive.  Only some will.  But you do know that if you're ANA positive now and no symptoms, you could at some point test positive before showing symptoms.  Based on this, you could anticipate that certain lupus symptoms are around the corner, if you really want to track this type of thing.  But it doesn't always mean you will be dx'ed with SLE, since those who never became dx'ed are excluded here.

Arubuckle basically reverse-engineered the antibody seropositivity by tracking the records of U.S. servicemen with SLE, whose blood sample were frozen for many years.  Since she tracked backwards, those who're false positives on ANA and SSA/SSB are excluded here. 

The article says you're positive for about 3 antibodies by the time you're diagnosed.  Which makes sense, since it takes a long time for diagnosis, as we all all know.  You become seropositive for more antibodies as time passes.  ANA first, then DS-DNA, then Smith ... kind of ominous.  For these servicemen and women, it took almost 7-10 years after becoming seropositive that they were diagnosed.  They were clearly struggling with symptoms, beating around the bush, going to their army PCPs, dermatologists, nephrologists, pulmonary specialists, etc. before finally being dxed.

Not that much different from today.  We're all doing the same thang.  Except that we have more trained rheumies these days who are knowledgeable about these antibodies, thankfully.

[bjnc]

Go ahead and make the appointment for 3-5 months out if you haven't already done so.  Then, call a couple of times a week, or however often you want to, and ask if there have been any cancellations.  I've gotten cancellation appointments and gotten in much earlier with new doctors a few different times.

Hope this helps.

[IllnDontWantAPill]

Thanks for all the responses everyone. I appreciate it. I think I'll just trust I have SS and learn to accept that and be okay and confident with that.

[slccom]

Thanks for all the responses everyone. I appreciate it. I think I'll just trust I have SS and learn to accept that and be okay and confident with that.

Not the best news,and not the worst news.

I'd say enjoy, but the only thing to really enjoy is this forum...

Hugs, Sharon

[Ripvanann]

Hey Illin, I was like you for the first few years. Wanted to know my enemy. Wanted to tell people what I had. After being diagnosed with Primary SjS (going only from history and current symptoms, all neg. testing) and by one of the most respected Rheumies around, I found that it was less than a good feeling.

That Rheumy only had room in his book to Dx me, not treat me, so  I went to several different rheumies who seemed to only want to contradict the famous Rheumy. Gathered more Dxs (and different).

When a bunch of tests began coming back positive and everything was jacked up, I began getting Dx with things that weren't even there, just so they could give me an answer. I quit changing my signature because it changes so much!

I feel that I have a marvelous group of docs now (including that Rheumy who Dx me, he graciously took me on). Rheumy, endo, endo surgeon, pain management, pulmonologist... They all agree with what most are saying here, they overlap and mirror one another and cause one another ...

Truly, all AIs are indeed the same disease. Our immune systems attack us. I think what makes it different from one person to the next, is how and why it attacks certain parts of our bodies. So you look at one signature to the next and you see a laundry list of disease, all caused from AI. The diseases in and of themselves are what ends up needing treated.

I've begun telling people "Oh, I'm all jacked up with AIs and complications from AIs." Truly, most docs don't even ask more when I tell them this and your average person definitely doesn't.

Hope you get answers and treatment that you're satisfied with. It stinks, I know.

Peace and blessings,
~Andrea

[IllnDontWantAPill]

Sharon...I CANNOT enjoy this disorder! I do enjoy the forum and that's about the only thing related to this disorder that I CAN enjoy!

Andrea, well put. I agree. I get so sick of saying I have Tourette Syndrome, this deficiency and that one, IC, prostate problems, ADHD, etc lol. It's easier to say "I'm doing well...how are YOU?" I just say I have Sjogren's and doctors don't know what the heck they're doing for the rest of my symptoms/possible disorders I realize they aren't perfect or God, but "I don't know" is never an acceptable answer to me, in the medical field. I feel it's a cop out and so is "sometimes we never find answers as to why you feel like crap every day." No! BS! My body is telling me for a reason. It's sending out warning signals be it pain, shakiness, headaches etc. There's ALWAYS a reason...especially for pain. It's an easy way to wash your hands clean of a patient because patients like me are looked at as troublesome or annoying or hypochondriacs. Just because we want an answer. I'd like to smack the smirk off my last cardiologist face because she says my heart symptoms are from anxiety and that "it's real...definitely real, just not something we pick up on testing because it's anxiety kind of real." I want to smack her so bad and wipe that smirk off her face. She doesn't even know potassium def. can cause severe nausea??!! And you're a cardiologist? 5 minutes of research online at mayo or somewhere else can tell you that! So frustrating!!