It hit me like a ton of bricks that there's an SS-A and an SS-B test. My SS-A was flagged at 8.0 when the range is 0.0-0.9 I wondered a few days ago "I wonder what the difference is?" That led me to do research and I found out that when your SS-A is abnormal, it's less likely to be Sjogren's, but instead, Lupus, RA, etc. Is that true? Most places I read had the same info that correlated being that SSA is more likely to NOT be Sjogren's but instead, SLE or RA etc. Is this true? Have I been misdiagnosed by being told I have Sjogren's? Really upset about this. My rheumy was a nut job. I wouldn't trust her with my cat and the poor soul has 3 kids. I feel sorry for them.
Thanks!!
Gary
I think you will find that there are people on this forum that are SSA or SSB positive, many are also sero negative. I feel it is more important that the Doctors treat your symptoms rather than your blood test results.
My daughter is SSA positive with a high ANA that is usually 1:1280. She usually has an elevated RF too. She was first diagnosed with SJS, these days her doctor refers to it as her Lupus.
Ultimately, I think both conditions are so similar it doesn't make much of a difference.
I started out with a butterfly on my face (lupus) and my first tests said lupus. My second tests said that nothing was wrong. My third tests said Sjogren's. The neuro said I was referred to him for Sjogren's. My next round showed nothing. I change Rhumy's and Based on symptoms I had SICCA.
I believe that they are all interrelated and you need to be treated for your symptoms. Often today's doctors focus on the blood work to determine what illness you may have.
Thanks all. What is SICCA and what is Sero and Seronegative? I don't mean to be argumentative but I care very much about the name of the disorder. I want to know exactly what causes me to feel like s@#$ daily. I'm not one of those people that care about treating it and feeling better ONLY. Mainly because I can't treat any of my disorders with medication after my brain surgery. The only thing I can have solace in, is knowing the name of what plagues me. I don't care if I had terminal cancer that was untreatable. I'd still want to know and know the name of it etc. There's comfort in knowing if nothing else since I can't treat it. I can deal much better just being able to put a name with the disorder. Thanks all!
By no means am I an expert, but wanted to reply to your post: I agree having a name, a label or the diagnosis is important. There is comfort there- you have a name to engage and embrace. So much better than saying " dont know, but i am sick." The worst is when you are sick and the doc says its stress, anxiety... I hope you are able to find a name for your own sense of peace.
Sicca, as I understand it is dryness. Dryness that relates to moisture producing glands. I had a doc early on that read my medical record that said its sicca when I have sj. I think the name is a more generic term to use for sj in absence of an actual diagnosis. For example: reactive airway disease is a more generic name for asthma but at the end of the day basically asthma.
I think treatment will be basically the same for sicca/ sj.
This is just my opinion- others may agree or disagree. Hope you feel better.
Hi Illn
As far as I can tell ssa-a is associated with lupus, RA and/or Sjogrens. sero negative means the blood test is negative. I am sero negative for ssa and ssb. Sicca is dry eyes and dry mouth.
It is possible that you have both lupus and sjogrens. I have been told I have lupus symptoms, because of malar rash, photo sensitivity and some others. There is overlap with them.
I understand your feelings about wanting specifics I have felt that way for the past five years. I only this week decided to finally accept my diagnosis of sjogrens 100%. I would have accepted it sooner with a positive ssa or ssb blood test even tho my lip biopsy shows lymphocytic infiltration and have been through much heck with the symptoms.
Take good care,
Dee
Dear Pill and all,
Here is something I posted on another site about Immune Mediated conditions. It applies here as well:
For those who have problems with getting a diagnosis/treatment, I have a some ideas and thoughts:
1. Go to a large medical center with a teaching hospital, connected to a well known research medical school. Auto immune conditions are complex, interrelated and best dealt with by the doctors who are doing research in immunology.
This is a list of the 12 best known medical centers:
http://en.wikipedia.org/wiki/Medical_centers_in_the_United_States
2. Try to understand that as soon as you enter the world of auto immune conditions, you have entered an uncertain world. Science does NOT understand the immune system well. The diagnostic tools aren't always accurate, and often don't exist at the level one would hope. The average doctor in private practice does NOT understand them at all.
3. The treatments for most auto immune conditions are NOT very effective. They do NOT address the cause of the condition. At best they are knocking down your immune system to keep it from attacking your body. Most of the drugs that knock down your immune system have serious side effects and when your immune system is knocked down, it may not fight off infections which is its main job. So you may have other infections more often.
4. Auto immune conditions cannot be cured with diet, exercise, herbs, acupuncture or any other alternative medicine. Auto immune conditions cannot be cured at all with our current state of medical knowledge. The key is to reduce the amount of damage that the inflammation of auto immune conditions can and does inflict on any part of our body.
5. Auto immune conditions have a host of co-conditions: profound fatigue, complex pain, depression, and many, many others. There are ways to alleviate most of the co-conditions to some extent, but during a 'flare' (a period of strong activity of your autoimmune condition) you will most likely be miserable.
6. Learning to live with a chronic disease/condition takes most of us a long time. And the conditions keep changing. Auto immune conditions often travel in groups, bringing along their friends.....so there is an evolution in problems over time.
If this is depressing, I'm sorry. But if you truly are here with the misery of life with a serious autoimmune condition, you will learn that support, information, and shared experience are vital to maintaining any vestige of sanity.
I have been struggling for many years, and the last three and a half would have been unbearable without the many forums that have supported me on my journey.
Many of us are here to help you, if you want support.
Hugs
Elaine
I am SSA positive, SSB negative. I've been diagnosed with Sjogrens, and am just being watched for Lupus right now. The treatment I am getting is the same for Lupus and Sjogrens. I've not been diagnosed with lupus because I am negative for the Lupus antibodies (Sm, DS-DNA) and don't currently have nephritis, pleurisy, or other organ damage that is common to Lupus. I do have dry eyes, mouth (sicca), malar rash, sun sensitivity, joint poin, fatigue. The Sjogrens diagnosis is based on the positive SSA, and sicca symptoms.
Sjogrens frequently occurs with RA and Lupus known as an overlap syndrome if that occurs. Autoimmune diseases are very hard to diagnose and evolve and change over time is how my doctor explained it to me. If your SSA is positive and you have low tear and saliva production, you can be pretty sure you have Sjogrens. You might also have Lupus or another autoimmune developing, but until tests specific for Lupus are positive and/or organ specific damage specific to Lupus occurs you won't be diagnosed. That's why periodic monitoring is important.
Initial treatment for Lupus and Sjogrens is Plaquenil and NSAIDS, sometimes Prednisone if in a bad flare. Then if that isn't giving relief they will look at other drugs like the chemo drugs and biologics. It is with the more powerful drugs that being more certain which autoimmune is going on is important.
I don't know all the details of your case, but if the Lupus antibody panel wasn't run, I would want that done. If those antibodies were positive or you have Lupus specific organ damage, then I would ask my doctor to explain why Sjogrens and not Lupus. If you're not satisfied with his explanation, get another opinion.
Hope this helps
Nancy
Well said Elaine!
Your words ring so true.
I went years getting tested for stuff and a name to what I had. I got a name and then it changed and then they added another and if changed again.
Happy to have my symptoms treated and also to have accepted this is my new normal...
Amanda,
The lab my doctor uses has a combination test that includes the antibodies most common to Lupus. The Smith antibody(Sm) and Double strand DNA(DS-DNA) are the most specific, but it also includes SSA, SSB, Sm/RNP, anti-cardiolipin antibodies, Lupus anti-coagulant. Each of those tests can also be ordered separately and not all labs group them together as a panel.
Since starting this journey I've been consistently positive for ANA (3.7, ref value >1.09); SSA, anti cardiolipin and lupus anti-coagulant, RF x1time (low positive), DS-DNAx1lowpositive. The RF and DS-DNA have since gone negative so might have been a false positive. It's been 10 years since my first positive ANA and start of this journey. I'm not so hung up on Which autoimmune this is any more as long as I'm getting treatment and am better than what I was at the start of this journey. I know this isn't going away and can't be cured at this time. If I can slow down, prevent progression I feel I am doing good.
Nancy
These controversial subjects are addressed in "The Sjogren's Book", ed. by Daniel Wallace, Sjogren's Syndrome Foundation, 2012. This book is available on amazon.com. It gives criteria for a USA diagnosis of Sjogren's, and a related but slightly different set of criteria agreed upon by the International Research Community.
The loosest definition of Sjogren's is the USA criteria, in which specifically measured eye and mouth symptoms are both present, plus either SSA and/of SSB antibodies, OR a positive lip biopsy. The International Researchers defined Sjogren's as having specific eye and mouth symptoms, plus SSA or SSB antibodies AND a positive lip biopsy.
The Sjogren's Book has chapters that tell what SSA and SSB antibodies are, and how they function to cause lymphocytes to attack healthy tissues. There are chapters about similarities and differences between Sjogren's and Lupus. There are many chapters about various alternative therapies.
The book's chapters were written by by over 50 experts in the USA, who represent most of the major Sjogren's research, medical, and educational institutions in the country. Dr. Vivino of Penn Sjogren Center is an associate editor. It is current as of 2012, and is packed with interesting information.
I kind of have the feeling that the criteria that currently define the auto immune diseases currently called "Sjogren's" and "Lupus" will change once the diseases are better understood. Research is progressing rapidly, and a cure could even conceivably be found for Sjogren's in the forseeable future - you never know what is going to happen next!
To partially address the original question by Gary - if you don't like your Rheumatologist, move on and find one you trust - no wonder you are confused.
I think I would be seeking a second Rheumy opinion, just my view on it, but if your Rheumy isn't at least R/O other possibilities before deciding on a diagnosis, I would be looking elsewhere, especially since you keep getting worse. Good Luck on your follow up. Don't be afraid to ask questions and speak up for yourself. there are ways to ask without being confrontational that usually get better responses with doctors.
Nancy
Great post Elaine.......
Gary, for another opinion, I think you should see an immunologist, as they specialise in problems with the immune system.
Good Luck.
Aussie Mom - sorry to hear your frustrations about not being sure what your diagnosis is. Not knowing is half the battle, I think. But if you are being treated with plaquenil and having success - that is something.
If you are not happy with your rheumatologist or feel like you are being given the run around - you may want to search for a new rheumy - someone who will listen to you, respect your opinion, and research your issues unil you are satisfied with your diagnosis and treatment.
I agree with other posters, however, there are so many similarities with sjogrens as with lupus, ms and many other AIs that sometimes it is difficult to determine which Ai one truly has.
Seek additional or new healthcare professionals if you are not happy with the one(s) you have and if you are not feeling better.
Sending positive thoughts and prayers your way. Keep us posted.
Gary, "everyone" and "anyone" who has doubts and is in decline should consider a second opinion. And perhaps as aussie mum suggested a different type of specialist.
Of course the reality is that "we" have limited energy, are frustrated, confused and at time afraid about the future..so sorting out the "new doctor" scenario is exhausting. Can someone help you with that? I have gotten good information on Drs. from the pharmacy, they hear a lot of from folks picking up meds...you may be surprised at how helpful they are.
Elaine gave great information.
Sorry to put a tiny wrench in the mix. I was Dx' at a teaching/medical center. 1st Dr decided SJS/Lupus. I think a family situation occurred. 2nd Dr and care has been with Head of Dept who changed it to SJS, and two years later added Fibro.
Sept 3rd I see her to discuss going to a SJS center for a full evaluation.
Point is same labs...same teaching hospital...different Dx. And I do not have the classical tender points for fibro...while other issues have become more paramount, beyond her expertise. Things change...
Sjogrens/Lupus the same?
In terms of treatment and monitoring I would said no.
I have seen a difference in reaction to when I had a SJS/Lupus vs. SJS/Fibro Dx.
Textbook: Lupus, possible life threatening; Sjogrens, non-life threatening.
*newer definitions of Sjogrens are more inclusive.
Sjogrens is still viewed as sicca symptoms, "dry" ..."you will be fine,and live an active life" etc by some Dr. who are not up to date on the systematic, kidney, CNS, lung, etc possible implications.
Say the word Lupus ...whole other response, attitude and attention. Not with all, but with some.
The advent of the 15 minutes of fame Sjogrens had in the news (probably will pop-up again during the US Tennis Opens, saw one or two lines recently), I believe also has added to the continuing misunderstanding about the severity and real life effect of this disease on average persons. To our detriment.
I mean really if someone can do all that what are you whining about? Exercise more.
And we are viewed in the context of social media, albeit inaccurately.
So if you see an article and want to spread awareness; if there is a comment section please DO post there with a link here. ( I will start a new thread)
It often helps to get "out of ourselves".
I do not know your personal situation and I do not want to intrude. So this is only for something to consider.
We really do "feel" better when we can help others, outside of the home...and really feel better when we help other less fortunate than ourselves. One hour at a nursing home, just talking to someone helps that person beyond your dreams, 30 mins at a school with a child in the school library (they behave there..lol) one-on-one tutoring on your way to the pharmacy? Gifts to give that empower ourselves.
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.
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
AMEN to quietdynamics.
The best way to help ourselves is to find ways to help others.
On line and F2F in RL.
Hugs
Elaine
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 (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 (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.
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.
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!
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
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
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.
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.
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.
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.
Quote from: IllnDontWantAPill on September 01, 2013, 04:19:17 AM
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
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
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!!
Mambo, that Arbuckle article was so interesting. Thanks for posting it.
Character building day! Love that. My character must be ginormous by now!
Also known as Another F......g Growth Opportunity. aka AFGO.
It's all one underlying screw up with our immune system, for sure.
And mine turns out to be deficient, which is why I test normal aka 'negative' for everything else.
Well perhaps we don't have to embrace our diagnosis....but we MUST embrace ourselves, our bodies which are working so heroically to survive and carry us through another day, and the miracle that is life.
I have learned that for me, we are here to learn, to be kind and useful to each other.
I have learned so much here, especially from the sharing.
Thanks.
Elaine