Tuesday, July 19, 2011

Background: The Path

Follow the Yellow Brick Road.....well, not exactly.....  I have been following a road for awhile now.  Not quite made of yellow brick, more like tongue drpressors.....but follow it I am!!

A year ago I went to the doctor for my annual checkup.  The doctor was very concerned with the pain that I experienced in my legs and back.  I also had some other issues that she was worried about. 

Because of major kidney issues from my past, I had to have a complete kidney workup.  I had to see a nephrologist and a urologist.  They found 2 stones in my kidney.  Since they didn't want to risk damaging my one and only kidney, they decided to leave the stones where they were.  They are in a good place, and will probably not move around.  Kidney..check.

I was sent to a neurologist for the pain.  He sent me through a bunch of MRI's, to rule out MS.  Nothing.  He did blood work to rule out Lupus.  It came back sketchy...but no. After about nine months, he a couple of punch biopsies on my leg, he finally discovered I have peripheral neuropathy.. This is where there is a problem with the nerves that carry information to and from the brain and spinal cord to the rest of the body. It can produce pain, loss of sensation, and an inability to control muscles. Bingo...that sounds about right!!  But what is causing it??

He sent me to a rheumatologist.  It took 2 months to get in to see Dr. Small, but I finally had a ray of hope.  He looked at my paperwork from the neuro and gave me an exam.  Almost immediately, he said, "I think I know what's wrong with you.  I think you have Sjögren's (show-grins) Syndrome."

What was THAT??  According to the Sjögren's website, it is "a chronic autoimmune disease in which a person’s white blood cells attack their moisture-producing glands."  Dr. Small said it was a sister to Lupus.  Apparently, it can mimic many other diseases, such as MS or Lupus (sound familiar?) 
Some of the main complaints are dry mouth and eyes.  It can cause problems in your nervous system and joints....which would explain a lot of things I've been experiencing over the last 10+ years. It can give you peripheral neuropathy.  The syndrome can possibly attack your organs...such as your kidney, so it would be good for them to find out for sure.

One of the only ways of positively identifying Sjögren's (beside blood work) is to have a lip biopsy.  They go into the inside of your lower lip, along the gum line, and take some samples of your salivary glands.  This gets sent off to Johns-Hopkins Hospital for diagnosis.  They are well known, apparently for their Sjögren's research.

I am scheduled for the biopsy today.  It is being done by an ENT (ear nose and throat dr.) It will take a couple of weeks to get the results.  I go back to the rheumatologist on Thursday for a checkup.  He said he won't have my biopsy results, but he will have my blood work back, so he can have a pretty good idea by then of what is going on.

I decided to create this blog to let my friends and family know what is going on with the progress, and keep them all updated.  Isn't technology amazing??  :)

I humbly ask for your prayers.  If you would like to read up on sjögren's, look at http://www.sjogrens.org/ .  It is really an interesting website.  My doctor, Dr. Daniel Small, is one of the contributing physicians for the site, so I know I'm in good hands....well....I am REALLY in the Hands of the Great Physician...can't get much better than THAT!!  ;)
I'll update the blog as things progress.

No comments:

Post a Comment