My name is Barrie and I'm 44 yrs old.  I want to thank Lynne for allowing me this opportunity to share my story with others and hopefully help as well.

     Throughout this time I had chronic stomach problems.  It was as if every day I would wake up to abdominal pain.  I was originally diagnosed in 1982 as having Irritable Bowel Syndrome (IBS).  Nevertheless, things had gotten progressively worse.

     Everyone was celebrating Thanksgiving in 1999, but I woke up to some excruciating stomach pain.  My mom had to take me to the emergency room.  After having numerous tests, I was told that I had sludge and that my gall bladder was severely scarred.  Ultimately, I had it removed and thought my stomach problems were gone forever.  Unfortunately, I couldn't have been more wrong.  I have had intermittent problems digesting my food.  There were days that I would literally keel over in pain after I ate my lunch.  I went to a gastroenterologist, who proceeded to tell me that I had a hiatal hernia.  So I was then put on Nexium along with Bentyl for the IBS.  One starts to think you're going nuts, because no one will believe you.

     It wasn't until the fall of 2003 that things went from bad to worse.  I had an infection underneath my breast, that turned out to be cellulitis.  I was admitted to the hospital and given intravenous antibiotics.

     I've always had problems with my skin.  Whether it would be cystic acne, shingles or a rash.  It wasn't long after my bout with cellulitis, that I started getting a red, stinging and itchy rash all over my body.  I found it strange that this usually occurred right after I got out of a hot shower.  The rash looked like wheals and just as fast as it came, it would quickly disappear.  I then went to a dermatologist who diagnosed it as urticaria.  He prescribed a couple of lotions, but to no avail.  When I went back to the doctor, he was completely baffled.  He then consulted with one of his colleagues who decided to take a skin biopsy.  When the results came back, I was told it was either a virus or a side effect to a drug that I was taking.  That means in translation, "I haven't a clue."  It eventually subsided, but not before causing a real annoyance.

     Also, within this time frame, I noticed the backs of my ears were all red and had a lump behind them.  In addition, I found strands of my hair falling out, everywhere I went.

     It wasn't until the spring of 2004, that things really got hairy.  My gums became inflamed and my teeth felt as if they were out of it's socket.  When I went to my dentist, he took an x-ray and noted that I had a cavity.  He cleaned my teeth and then filled the cavity.  Looking back at it now, the symptoms didn't really reflect a simple cavity.  It wasn't even a week before the pain came back with a vengeance.  It was driving me up a wall.  I then decided to seek another dental opinion.  The next dentist took several x-rays and found that I had numerous cavities and a lot of plaque.  His treatment consisted of scaling and rooting the gums and filling the cavities.  Once again, within a few days, the pain came back as if nothing was done.  I decided to try one last dentist and he finally pinned it down.  He thought it was some sort've "syndrome."   It was at that particular point where I thought it wasn't a "dental" problem as it was a "medical" one.  I checked out various boards to see what could be the culprit.  There was one Lupus forum who mentioned Sjogren's Syndrome, and when I checked it out, it was almost as if the symptoms were exactly on the list.

     Once the problems with my gums and teeth had started, I also had difficulty swallowing, talking, arthralgia, fatigue and easy bruising.

     It wasn't until I had gone to a new primary care physician that all the pieces of the puzzle started to fit.  He took some standard blood tests and noted some irregularities.  My sedimentation rate was abnormally high.  The normal range is between 0-25 and mine was 121.  He then followed up by taking a Lupus panel.  The SSA antibody came back positive.  So there was no doubt that I had Sjogren's Syndrome.  He then referred me to a rheumatologist.  The same rheumatologist had been treating me for the anticardiolipin syndrome, many years ago.

     I was officially diagnosed as having primary Sjogren's Syndrome in April of this year.  My rheumatologist told me that I've probably had this for a very long time.  He wanted to make sure that there weren't any other underlying diseases that went along with it.  Those test results came back "inconclusive," so that's where it all ended.  I was immediately put on Salagen and was told to come back in six weeks.  It took some time, but I found out that Salagen didn't help me much.  I was then placed on Evoxac.  That seemed to work pretty quickly and effectively.  While I now have moisture to speak of, the pain is still pretty much there.  I'm afraid I'm going to have to contend with this disease until I die or until a cure is found.  I will say that it's easier to digest my food now, but every once in a while I feel as if I have to drink a gallon of water, just to help digest my food.

     I'm finally at a point where I know what I'm dealing with and learning how to cope.  As bad as a chronic disease can be, it's better than being in the dark for most of your life.

     I want to wish the best of luck to all who are dealing with this debilitating and dreadful disease.  Your strength and faith will help you cope.  I know it has for me.

Barrie

Story Copyright © 2004-2007 Barrie