Got my lip biopsy results

[keelton]

I just got my biopsy results and it shows inflammation and lymphocytes and plasma cells but not enough apparently to diagnose sjogrens!  I am so frustrated. It's not that I want this but I am so tired of not having answers!  I wonder if it is just because its the early stages?  What else can it be? I have extremely dry eyes also. Once again a dead end. Anyone else have this result??

[keelton]

anyone else have this same result?? inflammation found but not sjogrens,  what does this mean? can it just be early in the disease process?? i am so confused

[Judie P]

I have never had a lip biopsy but my rheumy tells me I still have plenty of saliva.  My eye doctor says I am progressing towards having dry eyes, but not quite there yet.  However, my ANA tests and my SS-A were extremely positive.  It might be the early stages for you.

[keelton]

I have been diagnosed with extremely dry eyes.  I do produce some saliva still but not enough and sometimes feel like I have none at all.  I was really hoping that this would show something! I am so tired of not having any answers

[irish]

I am of the opinion that the intensity of your symptoms have nothing to do with whether you have a positive or negative lip biopsy--or vice versa.

My Sjogrens symptoms were some oral dryness. Bad enough that I was always sucking on sugar free candy,
but I never thought of Sjogrens and as a nurse I knew what it was. I had lots of cavities, root abscesses and root canals and bad balance and other neuro issues. Sick all the time. Started with symptoms of a couple autoimmune diseases in 1964 and diagnosed with lip biopsy in 2003. My mouth seldom gets terrible dry but the drs always remark about it. I did not have dry eyes until after my Sjogrens diagnosis.

As you can tell by the years I had tons of symptoms none of the docs ever thought of autoimmune.I endured a lot of stuff and had many doctors visits and Mayo Clinic, etc with nothing ever found. Spend a lot of money and took me all those years. The only thing I can tell you is to ask for a second opinion and to ask to have your symptoms treated at least.

Restasis drops for the eyes from an eye doctor--preferably ophthalmologist when you are so dry. Salogen tablets to help increase the secretions in your mouth. Plaquniel for helps with the inflammatory issues and can decrease the aches and pains. It can also decrease some of the fatigue.

Take care of yourself and manage to get out, even if it is to the library. Just getting out into the air and sunshine can improve ones spirit. Also, being in the presence of others helps even if we don't get a chance to talk to anyone. Be as. strong as you can be and cry when you need to and then pick yourself up again. All of us on this site have to do this everyday. Some days are lousy, some so-so and we can have an occasional good day now and then. Even with treatment with the big gun meds our days can go up and down.

We are never cured but we can improve to a tolerable state. When we stress out and worry we drag ourselves down and then the autoimmune diseases can just attack us with more vengeance. Know that yo will find a doctor who can help you but sometimes it is not so easy. The average time to diagnosis is 7 years and mine was 39 years. Don't even try to figure any of this out. WE just say on this site that we Sjoggies can go up and down but one thing is for sure. We are tough and we don't give up.

We cry when we need to, hunker down in the recliner when we need to, but we just keep on going. Remember that every time you see a new doctor you have another contact and then you may get another referral from that doctor. That is the way my life went for all those years and it finally paid off. We all have a story to tell, that is for sure. Good luck. Irish

[Kathy57]

Keelton,

I honestly don't believe that there are real accurate tests out there for Sj?gren's.  It is so depressing because you can feel so terribly unwell but your lab work can come back just fine. 

My mouth was so dry that there were callouses on either side where my dry mucous membranes where they rubbed across my teeth.  I had chronic oral thrush due to dryness.  I should have had a lip biopsy done but the doc I went to felt that I wouldn't need it because my blood work was okay.  That's not true because my Rheumatoligist said I should have definitely had the lip biopsy done because of my terrible symptoms.

To make a long story short - my Rheumatoligist told me not to worry because he felt very strongly that I had Sj?gren's and he told me that he would treat me for it with or without a lip biopsy.  He insisted on giving me treatment and has singlehandedly saved the quality of my life.  God bless him! Not all lip biopsy turn out well.  They can be done wrong or read wrong.  You take a risk when doing them.  So far I have not had a lip biopsy done but won't rule it out in the future.   My mouth and lips are so maddeningly dry and uncomfortable that I bet it would be positive but who knows?

Are you fatigued and experience unusual discomfort?  If so, find a Rheumatologist who will examine and assess you and who will hopefully treat your symptoms regardless. 

I take Evoxac 3 times daily and Plaquinil twice per day.  These have brought sanity back to my existence.  You cannot put a price tag on a doctor who can diagnose you without the positive tests.  The tests aren't all that accurate or great and unfortunately can be misinterpreted or done wrong.

Find a doctor who will treat you and not your lab results.  I hope that you find top notch help very soon and symptom free days.  Do not give up!

Kathy

[Deb 27]

keelton, I think many of us here can feel your frustration and totally identify! I hope you are seeing a good rheumatologist. You could always ask for another opinion.  Auto immune diseases can act like textbook cases and others not so much. Most of all, they need to help you feel better and address your symptoms at the very least instead of giving you a report and leaving  you hanging, still feeling bad. It's not normal to have a report like that, so they need to find out what's causing your problems.

I was diagnosed with a lip biopsy. It said I have Sjogrens but it didn't quantitate. Some doctors might question that, but I know my symptoms. I only have a positive sed rate, the biopsy and positive ANA that is now negative. Auto immune diseases can fluctuate.

Good luck!!!

[SjoDry]

Keelton,

Yes..I had a similar lip biopsy result. Irregularities, but not enough to meet the SS diagnostic criteria pertaining to a positive lip biopsy. It is frustrating. In every blood test I had, it was always negative..yet I had/have all of these raging symptoms.

I found out that I have CVID (an immune deficiency)..and I am unable to produce the antibodies that doc's look for in diagnosing SS. I think the bottom line is finding a doc that will treat your symptoms in spite of what your Bloodwork may not say.

It's definitely a journey. I hope you are soon able to get some answers & more importantly..some effective treatment.

Take care.
SjoDry

[keelton]

Sjodry,     I am also getting worked up for CVID diagnosis right now.  i have read that we may not make antibodies to detect autoimmune diseases,  but i assumed that the lip biopsy would be absolutely positive.  I know its not normal to have lymphocytes in your salivary glands and inflammation!   but apparently it doesnt show that i have enough,   Can you tell me a little more about your CVID,  diagnosis?? how often you are sick?? what age did you get diagnosed? are you on IVIG?? what are your levels???   i am so confused about all of these health issues,  i just cannot get a diagnosis of anything!  and so many symptoms of different things,   now i am wondering if all of my strange symptoms are because of CVID??     the funny thing is that i am really not sick that often,,  went through a period of time in my 20's where i had some strange infections, and one case of pneumonia, and colds that take at least 4 weeks to go away, but no need for antibiotics in years.   i am waiting on the vaccine challenge right now. 

[irish]

There is a site called Primaryimmune.org that addresses a bunch of the immune deficiencies. So many of us have the autoimmune diseases and the immune deficiencies plus many have allergies or mast cell problems. Good luck. Irish