Sjogrens?

[bguppy]

Just wanted a little insight into what's going on with me, and some input as to whether or not it sounds like developing Sjogrens. For the record, I'm not looking for an official diagnosis, and I am in contact with my doctor, but we're sort of at a crossroads with this, and I want to know whether I should bother pursuing a diagnosis and getting the (purportedly painful/invasive) lip biopsy.

Relevant data:

• I have dry eyes. My opthamologist originally indicated she thought it would clear up in "a couple of months", but it's been 8-10 months now with little change. They're not severely dry, but they're irritating. I can work on a PC all day with mild discomfort, but too much television or driving and they feel a bit crap. I put drops in 2-3 times a day. I have very mild blepharitis, but heavy omega-3 supplements seem to have it under control. As my opthamologist describes it "there's just not much of a tear pool". I'd say the dry eyes are "mild", "moderate" on really bad days, which are few.


• I seem to be developing something of a dry mouth. If nothing else, I am frequently thirsty, and I drink a ton of water every day. It feels like there's less saliva in there. My dentist/periodontist have both indicated I still have a fair amount of saliva, but it feels drier/tackier to me. The constant thirst is leading to a lot of urination as well. Dry mouth symptoms seem to be about 3-4 months old, but the thirst goes back further than that.


• Sjogrens was suspected and tests were run. ANA was negative, Rheum factor was negative, SS-A and SS-B were negative. All bloodwork comes back "normal",  or close to normal, including diabetes tests. My good cholesterol is low, that's about it. However, I know Sjogren's can be sero-negative, and that many auto-immunes difficult to diagnose.


• I'm 36 years old, and male.


• My general health is relatively lousy lately. Some fatigue, aches and pains, that kind of thing. A lot of it can be attributed to many, many years of poor nutrition and little exercise, but I'm in reasonable shape now and still feel fairly bad. Most of the chronic pain is from repetitive stress injury stretching back 15 years. Nutrition is improving, but still a struggle.

I know forum advice is no stand in for diagnosis, but much of the Sjogren's information available online talks about more advanced symptoms. Bone dry eyes and mouth, serious fatigue, etc. I'd like to know if any of this sounds like the disease in its developmental stages, and whether I should bother pursuing it further by looking into the biopsy (which I'm loathe to get), or if I'm being a hypochondriac and letting Dr. Google alarm me. 

[mshistory]

Hi bguppy, my honest opinion is that I would not go through a lip biopsy right now. It doesn't sound like your symptoms are severe enough to warrant an invasive procedure. There a lot of causes for dry eyes and mouth that aren't caused by autoimmune processes (are you on any medications, for example?) so unless you develop more troubling symptoms, I would just keep in contact with your physician about any progression or regression of symptoms.

Just so you know, though, my bloodwork is very typical of a Sjogren's patient according to my rheumatologist (extremely high ANA, SS-A, and RF). So I never struggled for a diagnosis like many of our other board members who may have a different perspective to offer.

I do hope that your symptoms subside and that you do NOT have this disease.

[Gayle]

My personal opinion is that I would check it out further. Blood tests do not always qualify a diagnosis. Are you seeing a Rheumatologist? Also, it can take years to find out what is going on but in the mean time - serious damage can occur. Ignoring is not a good option.
Good luck and I will pray it is an allergy.
Gayle

[topping21]

This was me to a T.   Very very similar pattern I went thru, it took me 9 months before they finally diagnosed me with SS.

[eye2dry]

hi bguppy

It sounds like my story....on how it began for me.
For many years I was treated for allergies. Then my eye dr. said it it was occular rosacea. I was treated for that as well.

I never got better, just quit going to the drs... period.
It wasn't until fatigue and hip pain that I went to my GP and he did labs..which then he sent me to rheumy....and then the sjogrens diagnosis.

If I add the years it took from my dry eyes till my diagnosis in sept 2010......lets see...approx 8 years went by.

Anythings possible. I hope you do not have sjogrens either.

eye2dry

[Joe S.]

Dry eyes, sinuses, mouth, skin, and bum? SICCA/Sjorgren's is a good guess.

[Patze]

Hi bguppy,

Let me also welcome you to the SJS World and family!  Please do look around as you'll find tons of topics and and scads of information by checking out the search engine located in the upper right hand side of this page.

I'm with mshistory as there are so many things that can cause the symptoms you're having, and unfortunately, if you're sero negative, it throws a whole new spin on things (gotta feel for the doctors trying to diagnose someone with all the symptoms and negative blood work).  Believe me, I sure feel for you!

Will your doctor treat the symptoms without positive blood work?  If not, can you get a second opinion maybe? 

Again, welcome and I hope that you find the board as warm, welcoming and informative as I have all these years.

Take care of yourself -

Patze

[Scottietottie]

Hi bguppy 

Welcome to Sjogren's world. I see you've had good advice already - so I just wanted to welcome you.

Take care - Scottie 

[Ark mom]

Hello, bguppy.

I am in the same shoes as you, in limbo, so to speak.  My only two rounds of blood tests within the past two years have been totally normal.  It is not that I want to own a disease as much as I just want help to try to ease symptoms and perhaps slow it's progression!  So, I understand how you are feeling.

[Meld256]

Hi bguppy,

Let me also welcome you to the forum! 

It's totally up to you, of course, if you want to pursue the route of lip biopsy, but perhaps at this point I would tend to wait if I were you.  That's only my opinion. 

Being young and male, I also believe some doctors wouldn't think of Sjogren's as something to check into for you.  Obviously you're having something going on, and would like to feel better!  Whether that is Sjogren's related, none of us can say.

As Patze suggests, can you speak with your doctor about your concerns? Hopefully they can help you discern what is happening.  If they don't take you seriously, it's always good to find another who will discuss all your options.

Again, welcome and feel free to ask anything and keep posting. 
Melinda

[Dolly Dimples]

I suspect you are quite concerned about the symptoms you already have ,
  otherwise you probably would not have written this., so If I were you I would certainly not have the lip biopsy as yet, infact I would personally never agree to it!! Treat the symptoms you  have got, eat healthily, and rest well, then you will probably see after a while how it is, or is not progressing.
    Sjogrens is normally a slow advancement, and some of us here have never been officially diagnosed.
Get the best Docs you can afford, and keep coming here, you will learn much good info.   Oh, and welcome,
                                                 Dolly