In the past few months I have read all of Lynne's stories and would like to share mine with you.  I too was sick for several years before a correct diagnosis was made.  My story sounds a lot like the others and knowing that others are going through the same thing did help me.

     I am 42, a mother of two beautiful girls, 7 and 11, and have been married for 15 years to a wonderful, patient man.  I started noticing that something was wrong about 6 years ago when my cheeks started swelling when I ate.  It would happen here and there and every time I wanted to go and see what was wrong the swelling would go away.  One day they swelled up quite a bit so I hurried to an Instant Care Facility just so that a doctor could see what I was talking about.  He said my ears were clear and that I should go and see an ENT.  I made an appointment and was told the gland was probably infected and was put on antibiotics.  To make a long story short it just kept continuing, and I went from an ENT then on to an oral surgeon, who in turn thought I had a calcium stone in my cheek and I came very close to having half my face opened up to remove this stone that I didn't have!  The thing that was so confusing is that an X-Ray showed a big white spot, but it ended up being infection.  After all of this the problem continued so one of my doctors sent me to another ENT and he suggested that I see a Rheumatologist.  She in turn came up with the Sjogren's theory.  I had a lip biopsy done and this confirmed the disease.

     For a little while these were the only symptoms I had, except for dry mouth and eyes.  Then the fatigue hit me and the body aches.  I could not get off the couch and felt terrible.  Then two years ago I started with terrible upper left back pain and I could not touch my stomach area.  I rapidly lost weight and looked terrible.  I was sent to a Gastroenterologist and he performed an ERCP.  This test was done to check my pancreas since the symptoms indicated this type of problem.  He was unable to get into my pancreas and said I needed someone with more expertise than he.  He sent me to a wonderful doctor at Oschner Hospital, where they were able to go into this area and add a gland to help give me more moisture to the area.  He told me my pancreas was missing a "canal", probably from birth, and that it was also tilted.  This procedure lasted a year and I am now having trouble again.  My husband and I have an appointment with this same doctor tomorrow and I don't know what else he will be able to do. The first time this problem started I weighed about 90 pounds by the time I got out of the hospital.  My one day procedure turned into a week in the hospital, a pain shot stopped my breathing and I required CPR and then a night in ICU.  It was terrible!

     The doctors at Oschner are not certain that my pancreas problems are from Sjogren's but time will tell.  It was important to me to tell people about this in case it is Sjogren's related.  I suffered for months with this pain and could not eat.  My first gastro doctor knew I was very sick and he was just as frustrated that he could not help me.  After I was released from Oschner Clinic I called to thank him for admitting my condition was over his head and that I needed expertise - you don't see that too often any more.

     I also wanted to mention that I did have severe vomiting episodes through the years and landed in the emergency room and went by ambulance a couple of times through all of this.  They said this is all related to the illness.  I know it is very hard on my family but they are there for me always!!  I love them more than anything else in the world and I am determined to get through this!

     Thank you for letting me share my story.  As I continue through my doctors appointments I will keep in touch and let you know what they are going to do this time around.

Sincerely, Mary