Latest Update

I went to the rheumatologist today.  He confirmed that indeed it is sjogrens.  He said that according to the pathology report, some diagnostic test had levels between 1-4.  Four being the most definite.  Mine was a four. Apparently I've had it for a long time.  

He put me on Plaquenil.  It is supposed to slow down the progression...he said if it made me feel better too, that was a bonus!  :)  I've read that it is a good prescription, with very few side effects. It takes about a month to get in your system, so we will see!! 

That's all for now.  If I have any new developments, I'll update the blog.  Thank you again for all of your thoughts and prayers!

Blessings,

Peggy

Biopsy Results

I just spoke with the ENT nurse.  The test results were positive.  It is Sjögren's.  Like I told Steve, we kind of knew it was going to be...it's just now we know for sure.

They have found some success with the drug, Plaquenil.  It doesn't arrest the syndrome, but it does slow it down...with few side effects.  Dr. Small had advised me earlier that this is probably the route we would go if the results were positive.

They have moved my appointment up from Thursday to Monday.  I should know more then.

Lab Results

Hi everyone!
Had a trip to the rheumatologist today.  Dr. Small is a great doctor.  I got right in, and he took a lot of time with me, explaining the blood test results.  There were some test levels he was looking for:  S-somethings...that were low, which was good.  If the level was high, then there could be a potential for lymphoma in the future, if it is sjögren's.  A lot of if's there!  My level is low, so no worries. 

On the other hand, my creatinine level was a bit elevated.  They want to keep an eye on that, as it can determine if there is kidney involvement.  The normal levels are .06-1.0 for women.  Mine was up a little...1.2.  It's nothing to get anxious about...just to be aware.  He told me to just make sure that I don't take any medicine that could damage my kidney.  Oops...I've been taking Advil once a day in the last couple of days for the lip pain!  So he gave me a prescription for a different kind of pain reliever that doesn't contain NSAIDs.  He said it should help with the muscle and joint pain, also.  He gave me a paper about Plaquenil, the prescription that he may give me if I do have sjögren's.  He told me to look it over and see if I have any questions.  What a difference!  I haven't had ANY doctor do that before!

My weight was down, and he was pleased about that.  I honestly think I'm going to patent this diet and call it "The Lip Biopsy Diet"!  Nothing but pudding, ice cream and shakes....  Sound good?  Give it a couple of days, and the thought of milk products will make you want to run for the hills!!  :)  Soooo....if I hear of anyone going ahead of me and copyrighting the diet...I'll be seeing you for my royalty check!!  ;)
I go back on the 4th of August for the results of the biopsy.  If nothing new develops before then, I'll update you in a couple of weeks!

The Biopsy

It is not good to be nosy.  I can get myself into so much trouble by being too inquisitive.  Before the biopsy, I decided to look on the internet and see what to expect.  Not a great idea.  I came across all of these people who had horrible experiences with lip biopsies.  They had permanent numbness, and severe nerve damage and pain. 

Needless to say, I was a bit nervous going in.  I was to have Dr. Brian Hoban , an Ear, Nose and Throat doctor, do the surgery.  Yes...I looked him up on the internet, too.  Nothing bad about him, that I saw...that was good.  I asked his nurse if he had done a lot of these...she assured me he did them all of the time.  I began to relax a little.

Upon meeting him, my fears were relieved.  He was such a nice guy.  He explained things in detail, what he was going to do, and what sjögren's was all about. I asked him about the possible nerve damage, and he said I may feel a tiny bit of numbness, but major nerve damage was very rare.   After he put the numbing spray in my mouth, he left for a few minutes to let it take effect.  He went to see another patient.  I could sort of hear them talking...not what they were saying, but I could tell he was being very thoughtful with them.  The nurse came in and said she was sorry I had to wait.  He had been given 4 new patients that day, and he likes to get to know them.  I thought it was very nice that he took the time with each of us...it showed that he cared. 

They did the biopsy right in the chair in the room.  The nurse came in to assist him. He gave me the shot, my lip puffed up like a balloon, so I couldn't feel a thing.  He told me they needed to get about 10 of the little salivary nodes.  He said it was like picking up little peas.  At one point, he told the nurse, "I don't want to try and get that one...it's under a nerve..I don't want to cut it."  You know me...can't keep my mouth shut even in surgery...  I mumbled, "Thank you!"  They laughed.

After a little bit, he says, "Almost....oh...we're losing her...."  I knew he was talking about the 'pea' but I waited until his hands were free from my mouth and said, "You know, that's not the best thing to say during surgery...."  The nurse said, "I was thinking the same thing!"  The doctor said, "Ok...point taken...you're right!!"  We had a chuckle about that, too.  Well...I did the best I could.....  :)

All in all, it was not a bad experience at all.  Nothing like I anticipated.  My stitches should dissolve in about 4-5 days, after that I should be able to eat regular food.  The pain hasn't been that bad.  I've taken nothing stronger than Advil.  The numbness doesn't even seem to be a bad issue.  I am very grateful for all of the prayers that have gone up in my behalf.  Thank you from the bottom of my....lip!

Thursday morning is another appointment with the rheumatologist.  I'll give another update after that.  :)

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.
Blessings,
Peggy