Sj?gren's or not?

[GgcJap]

Hi everyone,

     I was wondering if there is any other possible reason that someone would have dry eyes, mouth, nose and stomach issues?
     My blood test was negative, my lip biopsy also so my doctor tried to tell me it's not Sj?gren's. I would love to believe him but when I search the net for the symptoms sjogrens is the only thing that comes up.

Thx in advance
GgcJap

[Linda196]

The top differential diagnoses for your symptoms are  sarcoidosis, granulomatosis with polyangeitis, IgG4-related disease, chronic hepatitis C virus or human immunodeficiency virus infections. When you say your blood tests are negative, do you include general labs like ANA, ESR and CRP, and were specific immunoglobulin tests done? Those tests, while not specific for Sjogren's, can indicate a wider range of immune diseases, and also inflammatory or infectious ones.

Other causes can be environmental, like some chemical exposures, radiation or surgery, but you'd be aware of those.

[GgcJap]

Linda196,

That's a lot of different diagnoses! I don't know what half of them are and they all sound scary.
This is the problem with my lack of knowledge and my Drs lack of interest I think. He said the blood test was negative and i said ok. What sort of questions should I be asking? Is it the same with the lip biopsy because all he said was that's negative too? This is definitely a huge learning curve for someone that's never really been good at study and I find it even harder now trying to concentrate. In fact sometimes I feel like my heads in the clouds.

Thank you
GgcJap

[MAT51]

Most of us have struggled to wise ourselves up and learn how to interpret out test results against our symptoms GgcJap. For me this is despite being ruled by severe fatigue and not being academic or having studied any sciences at school!  Heck it's even a struggle for me to get member's names typed here! But this is what you will need to do in order to get to the bottom of what is ailing you.

People think that dry eyes and mouth with tummy problems and fatigue must be Sjogrens Disease but the reality is that these are very generic symptoms that can be part of many other diseases and conditions too. To make it more complicated - no one has exactly the same presentation of a connective tissue disease and if your bloods and lip biopsy were negative then it makes SS and Lupus far lesss likely - but not impossible. You need to study the other diseases mentioned here and do your research if you want to get diagnosed and access treatment. It is the only way!

[LilliaT]

GgcJap,

I'm in almost the same boat as you.  I have dry eyes and dry mouth and am often exhausted despite adequate sleep, but I have a negative lip biopsy and negative blood tests.  (I had a slightly positive ANA was negative for the Sjogren's antibodies and all the other autoimmune-related labs that my doctor ordered.)  Because of the positive ANA, I worry that there is an autoimmune issue.  But because of my lab results, the rheumatologist seems to think there's no issue, and the ENT seemed to think that the negative lip biopsy was pretty dispositive. 

I know, from reading this board, that it is possible to have Sjogren's despite negative bloodwork and a negative lip biopsy.  But it also does seem that there are other possible causes of dry eyes and mouth, not all of which are necessarily autoimmune.  (A while back, someone posted a link here to a published case study about a woman who received a Sjogren's diagnosis despite negative blood work, and it later turned out that her symptoms -- fatigue, dry eyes, dry mouth -- were the result of a contact allergy to certain food/cosmetic ingredients.)  I've heard of nutritional deficiencies or other issues causing Sjogren's-like symptoms.  For example, I have an acquaintance who had all sorts of strange symptoms for years, some of which sounded like Sjogren's.  Later, she was diagnosed as having a kind of MTHFR mutation (and various food sensitivities), and her symptoms disappeared after proper treatment. 

I don't mean to suggest that you definitely do or don't have Sjogren's, nor to give you false hope.  It's more just to say (as others have said) that there seems to be a lot that doctors don't know, and it is frustrating.  I go back and forth between being terrified that I have Sjogren's (or some other autoimmune issue), and being hopeful that it's just some temporary thing with a treatable, identifiable cause.  It's partly a denial mechanism.  I still think of myself as relatively young, and have always been pretty healthy, so it's almost like my mind can't accept that I might have something serious and chronic. 

[StevenB]

I wonder if you are seeing a regular doctor or a rheumatology doctor?   A rheumatologist will know that it takes years for your blood tests to start to show positive.   The symptoms show long before the blood tests start to reflect it.    I've been diagnosed for quite a few years now and my tests usually show
negative but close to the benchmark between positive and negative.   Sometimes a blood work will be just slightly over the marker and sometimes not.   

[GgcJap]

Mat51
     Learning I am and learn I will. I will def be studying all possibilities and hopefully my Dr will be doing the same.

LilliaT
     At the moment I really don't know what to think, all options are scary but I like yourself still hold some hope that this is one of those rare things that will go away, diagnosed or not I don't ever want to lose that hope. Hard to hold onto it at times though. I find I'm very up and down on a day to day basis. Thanks for the kind words.

StevenB
     I am seeing a normal doctor who specialises in rheumatology, if that makes any sense? I will be going to a different hospital on the first to hopefully get referrred to a Sj?gren's specialist. I'm of the belief that even if it is not Sj?gren's he will have more interest than the dr I'm seeing now who to be honest, doesn't really instil much hope in me. i will find a Dr that I can trust though.
My Dr just told me my. Blood work and biopsy were negative no other explanations, I was not educated enough to ask the right questions. I will try on my next visit to get more information, maybe even a copy of the results.

GgcJap

[keelton]

I am in the same situation ,  negative blood work and biopsy.  However my biopsy said that there was inflammation and lymphocytes present but not enough for sjogrens  so it's negative.  I find this hard to believe!  I think its early presentation.  Having inflammation and lymphocytes and plasma cells in your glands is not normal!!   What did your results say exactly? 

[GgcJap]

Hi keelton,
     I was just told by my doctor that the results were negative and I didn't have the knowledge to ask anymore. I will be definitely asking at my next appointment. I'll also be seeing if I can get a copy of the results.

GgcJap

[WhatYouSjo]

Hi GgcJap,

You've already gotten a lot of good advice on this thread. I would note that while a negative biopsy and lack of SS-A and SS-B antibodies don't meet the current Sjogren's Syndrome (SS) diagnostic criteria, it is certainly possible that you do, in fact, have SS. I wrote a blog entry with some of my thoughts on this phenomenon last month.

I myself am seronegative (negative blood work) but otherwise have very traditional SS symptoms. I've also responded well to SS treatments. As a result, I consider myself to have SS, and my current doctors generally support this, though my previous doctors brushed me off. I've had several young men (20s and 30s) give a similar story of negative test results and similar symptoms, which makes me think that young men are more likely to be in this situation. Of course, there is little data about young men and SS, so I can only use a small number of anecdotes to support this theory.

My advice is to keep exploring, as there are differential diagnoses such as hypothyroidism or sarcoidosis that could potentially explain your symptoms (though eye and mouth dryness are uncommon manifestations for both). Don't rule out SS completely, however, as it still provides the best overall explanation for your symptoms.

[GgcJap]

Hi Whatyousjo,
     I understand the high possibility that it's Sj?gren's, with these symptoms I can't see it being much else and now have to find a Dr that is willing to do all the tests to rule everything else out. My current Dr just told me the tests are negative, didn't suggest where we go or what we do from now. Did give me 10mg of prednisone just in case it is an autoimmune disease. I get the feeling he's not really too interested. I need to find a good Dr!
I'm off to work now but will def have a look at your blog later and your right there's not much info at all about men or young men for that matter at all.
Thx for the advice, I won't stop searching until I find an answer.

GgcJap

[LilliaT]

I just noticed from your signature that you are in Japan.  My mom grew up in Japan, and she has told me stories about her dislike of dealing with doctors in Japan.  She said that doctors generally expected to be treated almost as gods, did not like to be questioned, etc.  She hasn't lived in Japan for decades, so I would hope that things have changed since then -- and that you're able to find knowledgeable doctors who are open to questions. 

Even here in the U.S., and even with very kind and well-meaning doctors, I often realize after an appointment is over that I've failed to ask the questions I intended to ask, or that I didn't follow up on unsatisfying/incomplete answers when I had the chance.  It must be that much harder to do it in a place where doctors are less forthcoming.  It sounds like you're preparing questions for your next appointment, which is smart.  If you have a written list of questions ready (and try to make sure that you're given useful answers in response), hopefully you'll at least feel like you're making some progress.  I genuinely wish you well.

[GgcJap]

Hi LilliaT,
     Yes I'm in Japan and I find most of the Drs ok to deal with but finding a good Dr, one with knowledge is very difficult. Being medical terms communication is also sometimes difficult. Finding a dr with the patience to explain everything is one thing but maybe having to explain 2 or 3 times is also very difficult. I am surviving though.
     I'm preparing lists of questions for my Dr but am also looking for a Sj?gren's specialist, few and far between over here. I've found one and my current Dr doesn't want to refer me to him, saying there's nothing that he can do that I can't. Hence I'm going to another hospital soon to get my referral.

Everything will work out for the best. I've learnt very quickly that patience is a virtue.

GgcJap

[adamkingdm]

GgcJap,
I'm in the same boat as you. Negative lip biospy and universally negative bloodwork using every traditional Sjogrens marker and most standard auto-immune markers (ANA, SSB/SSA, SCL-70, RF, ESR, CRP, IGG, IGA, C3C, C4C, SM, SM/RNP, and several more). I've literally been tested over a dozen times, over the last year.  I have however, tested positive for an "early" marker, SP-1 Antibody, using the newer "Sjo" test. I've been to several rheumatologists who have been rather dismissive of the "Sjo" test because it doesn't have a lot of data (studies) behind it and is not FDA approved. I doubt that it is a test you would be able to get in Japan at this time.

So I'm basically in limbo. I'm dealing with dry mouth, dry eyes, intermittent dry cough, intermittent dry sinuses. intermittent muscle pain/cramping & GI/IBS issues. I'm a complex, atypical case because of my age/gender (32/m), negative lip biopsy, and extensively negative bloodwork after dozens of re-tests. It has been suggested (by my rheumys) that I seek a extensive endocrinological workup. I am also about to have surgery for a varicocele which has been lowering my testosterone over the past few years. Low T can cause "general dryness" issues.

[SjoDry]

GgcJap,

Don't know if you found this or not?

Japanese Sjogren's Association for Patients
Division of Hematology & Rheumatology
Dept. of Internal Medicine

30-1 Oyaguchikamimachi
Itabashiku Tokyo 173-8610

Phone: 81 (0) 39728111 Ext. 2402
Dr. Masami Takei
Fax: +81 (0) 3 3972 2893
Website: www.maeda-shorten.com/Sjogrens

Hope this helps! Maybe it's a start to finding a well-versed Doc.

Take care.
SjoDry