Non-specific Inflammation diagnosis

[nubythedog]

Hey there people!  For the past six months my parotid glands have been way swolen.  My bloodwork came back with slightly elevated ANA, but no speicifc Sjogren's antiobodies.   Last week I had a biopsy done on my right parotid.  They had to put me to sleep to get it and I have a nice scar now around my ear.  Anyway, I just got the call from the Doc and he said all they found was non-specific inflammation.    I'm 37 years old and male, so Sjogren's would be a rare thing for me to have.  However, I have all the symptoms of it.  Now the Doc's aren't sure what to do with me.   No cancer at least.    No anything.  Just this crappy non-specific diagnosis.  I'm not sure what to do at this point.  Any suggestions?    I've had sjogren's like symptoms for 10 years now.  What else could it be that wouldn't show up on blood antibody tests or this biopsy?  I'm at a loss. Very frustrated. 

[fluffiebunnie]

I am the same.. lots of inflammation but no other proof of having SS by way of blood tests etc... I still think you could still have SS .. I feel I have it too. Lots of doctors will diagnose SS without blood proof as it is something that sometimes doesnt show.

I am hopeful that with my symptom diary my Rheumatologist will diagnose SS in August when I see him.  I dont want to be diagnosed with anything, but it is better than this limbo land of the best part of the last year...

I am sure more experienced people will explain/advise better soon.

[Scottietottie]

Hi Nubythedog!  

Welcome to Sjogren's world. You wouldn't be the first man in here with Sjogren's and you're certainly not the first person with negative blood results.
Some rheumy's will treat on symptoms. After all - when Sjogren named the syndrome - there were no blood tests. It was dxd on symptoms - end of story!

Like you say - it's good to have ruled out cancer. Now, what you need to do, is to get the symptoms treated - dx or not. Maybe you could ask your doc if you could try something to see if it works. There's lots of info on this site.

I hope you find Sjogrensworld useful.

Take care - Scottie  

[Patze]

Hi nubythedog,

Let me also welcome you to the SJS World!  Ah, also welcome to the sero negative crowd here, and I'm sure some of the guys will be around soon to also welcome you.

I'm glad that there was no cancer, whew, that must have been a bit scary for you!  

Some rheumy's will treat the symptoms, and some won't.  And Scottie has a good point, can you see if your doctor will prescribes something to help your symptoms?  Yep, and she's also right about the doctors treating the symptoms before the blood tests were developed.

Hang in there, and keep us updated about what your doctor does.

Take care -

Patze

[Linda196]

Hi and welcome Nubythedog.

As you can see, you'll have lots of comany here, both in the area of negative test results and the odds-beating number of men with SjS. I'm sure a mathematician could come up with the exact percentage of the sero-negative male possibility, but if SjS affects approximately 1 in 98 Americans, men are 1/10 of the SjS family, and sero-negative people are 30-50% (depending on the study you read) does that give you a 1 in 326-490 chance? If you "won" with those odds, you should start buying lottery tickets! Add to that, the number of people with SjS who have only mild symptoms, and no extra glandular involvement, and the number who are diagnosed as an afterthought because they have another AI causing most of their problems, and you are rapidly becoming a rare commodity!

At least you got acknowledgement of inflammation...that may open the door to treatment with Plaquenil, which seems to have anti-inflammatory properties, although its exact mechanism in AI isn't understood.

[nubythedog]

What exactly can Plaquenil treat symptom wise?  Currently I've got these HUGE parotid glands, dry mouth, dry eyes, my teeth have gone from having no cavities at all 8 years ago to having 4 root canals and now two bridges, plus psoriasis and the beginnings of arthritis in my hands and my left hip, and a very weird symptom of  very sore testes that's been ongoing for 7 years now.  I am overweight, which probaby has something to do with some of these syptoms, but even when I wasn't a lot of them were still present.
Thx for all the advice! 

[Wynter]

I know weight has something to do with all illnesses. I still have problems with the dryness and used to exercise and control my weight, yet I still have this stuff.

[Scottietottie]

Plaquenil is meant to slow the progress of the disease. It got my blood from being positive for lupus back to being normal when tested. I personally found it helped both fatigue and brain fog. I don't think its helped my aches and pains any but others reckon it helps the pain. My eyes are actually better than they were when I started it too.

Take care - Scottie