It took four years to be diagnosed.  I was diagnosed in late 2001 (when I was 57 by an orbital surgeon at the University of Michigan, Kellogg Eye Clinic).  My only symptom at that time was a swollen left eye.  My doctor discovered a tumor that had been growing for at least five years in my left lacrimal gland.  When it was removed, the tumor was 1½ times larger than the eye globe itself.  Before I had recovered from the eye surgery (3 months), my left parotid gland started growing very quickly.  It was biopsied and the small left parotid was removed.  Within 6 months, my right (eye) lacrimal gland began growing.  My symptoms increased to dry, granulated, itchy eyes, with a film that seemed to never go away.  When I woke in the morning, my eyes were covered with crusty granules as well as a thick gooey gunk running down my face.

     I experienced aches in my arms, carpel tunnel in my left arm, both knees ached but more so on the right knee.  I even hurt my knee just walking across the room and had to elevate it for four weeks before the pain diminished. 

     In 2001, I had all my tear ducts plugged, but that only lasted a few weeks because they started to open up so they were then cauterized.  Then I had a new growth in both the right and left submandibular glands.  They started out to be rather small, sort of like a sore throat.

     In 2002, the left submandibular gland was biopsied and even though the doctors were positive it was lymphoma, it turned out to be 100% inflamed.  In May 2003, I had all my tear ducts re-cauterized  because the ducts opened up and I had ¼-inch of the outside of each lid sewn to preserve what precious drop of moisture still remains in my eyes.

     I use the ointment in my eyes, I use the no-preservatives tear moisture drops, and I apply daily hot cloth treatments to the eyes.

     Nearly all foods taste like aluminum foil and the headaches are never-ending.  I continue to work (as a  paralegal), but I have days when I wonder how long I'm going to fake being able to see, since reading is a major part of the job.

     In March 2003, I was seen at Mayo Clinic by Dr. White, a Hematologist, and Dr. Olsen, a Head & Neck Surgeon, who determined they couldn't do anything for me, except recommend an experimental drug, Rituximab.  The bone marrow was negative.  The MRI revealed that the right lacrimal gland growth was now 1½ to 2 times greater in size than the right lacrimal.  It also detected that there was a growth beginning on the right parotid.  Other than that, they could make no other recommendation.  They claimed that my type of Sjogren's was extremely rare and that none of them had seen this type previously.

     I took Methotrexate and Prednisone for about 7 months but it made me very sick, I lost nearly all my hair on top in the front and on the sides, and noticed no improvement whatsoever.  The Prednisone reduced the size of the growths but I can't take it very long because it has terrible side-effects on the internal organs not to mention the rapid weight gain.

     My latest development began in March, 2003.  One day more than 20 lumps of various sizes appeared behind my left ear, on the neck behind the left ear, and down the neck 3 or 4 inches.  In July, 2003, I noticed more than 20 new lumps appear on my left face in the area directly in front of the ear and down the jaw 3 or 4 inches.

     I have the usual aches and pains in the joints, I don't sleep well at night and have a difficult time breathing.  I also have asthma and I'm allergic to dust, codeine, and adhesives.  I've been asked about the possibility that since I am a carrier of the Cystic Fibrosis gene, that perhaps that might have something to do with Sjogren's.  I would love to know if anyone else has been asked about defective genes?

     I am now seeing a new rheumatologist, Dr. Guggenheim, and she has sent my records to the only three places that were recommended to have possibly seen this type of Sjogren's previously:  Stanford, Univ. of San Francisco, and Memorial  Hospital in NY.  She just heard back from Univ. of San Francisco and they are extremely interested but said this condition was out of "their league."   That's what nearly everyone says, "this is out of our league."

     I realize that no two people who have Sjogren's have the same symptoms.  However, I would love to hear about all the people and places others have sought for treatment for these type of growths, as well as symptoms and the type of medications you have taken.

Good luck to all of you,

Marie A. Harris

Story Copyright © 2003-2007 Marie A. Harris