My Sjogrens Diagnosis Story

16 years after my first problems started, I received my Sjogrens diagnosis. Here is my year by year story, starting in 2000, and continuing to July 2016, when I finally receive my diagnosis.

I’m not alone in seeking a diagnosis.  In some ways, it doesn’t matter why a person hurts, but getting outside verification is validating.  Friday evening, after being given my Sjogrens diagnosis, I searched the internet for stories about how people were diagnosed and how long it took for them.  I felt a connection with others who traveled before me, so in the spirit of commiseration, here’s my story.

Year 2000.

I moved to California to follow my Silicon Valley “tech boom” dreams.  A friend drove with me from Tennessee.  The good: I fell in love!  The weird: My ankles kept swelling.  Painful.  We thought maybe it was something like gout, so I avoided red meat for a while.  It didn’t help.  Meanwhile, I had pretty awful periods – complimented by bloating and muscle aches.  So, I went to the doctor.  No tests later… I was prescribed a diuretic and told to have a nice day.  Helped a little I guess?  I never got back to the doctor — too much “life” going on.  My ankles continued to swell and I continued to have occasional muscle aches.  Nothing I couldn’t handle.

2002.

Tech bust. “fuckedcompany.com” was a popular web site to report increasingly bizarre flailings of exploding start-ups.  My company made the list by laying off 50 people per day via email.  Since I was a single mom, I jumped ship before my ship threw me overboard.  I took a job with a large private University back home in Tennessee.  At least twice a week, my ankles swelled and now my feet occasionally hurt in a way that made it difficult to walk.  On and off.  Sometimes I was fine.  I would awake in the morning to hurting feet and back.  My ankles continued to swell and I continued to have occasional muscle aches.

2002-2005.

Increasingly achy and pain-ey.  I also started to gain weight.  In 2004 I moved to the other side of TN and changed jobs.

2006.

I thought that maybe my pain level was due to gaining weight, so I started playing Roller Derby.  It took me longer “warm up” than the other girls because I was stiff after work, so I warmed up on my stationary bike before practice.  Unsupportive skates caused “morton’s neuroma”. My doc said it was because I had floppy feet.  A steroid injection resolved it.  I went to an ob/gyn about my period cramping and pain.  She ablated endometriosis all over and it helped things a lot.  I was hopeful that I was “cured” because months went by with little pain.  It was snowboard season.  I tore my ACL snowboarding!

2007.

Had my ACL reconstructed.  I did physical therapy religiously but it took over a year for my knee to feel strong again and I never went back to roller derby.  I still swell and hurt.  Seems to come and go, so by the time I see the doctor, my symptoms are usually resolved.  My family doctor said it was probably due to my weight, or my surgeries.  I felt like maybe it was all in my head and expected full recovery each time I would recover from the achey, swelly, hurty time.

2008.

Migraines.  My family doctor referred me to a neurologist.  I was prescribed Topamax and after some side effects settled down, it seemed to work.  Since I took the stairs at work to exercise my knee, I developed hip bursitis and IT band syndrome.  Physical therapy helped, and things settled down.  Later in the year, I had my first seizure.  I did a sleep-deprived EEG (electro-encephalogram) in the office and a 48 hour EEG.  Wave pattern results showed seizure activity and I was diagnosed with Epilepsy.  I was already on Topamax for migrains, so my dosage was increased.  I had a few more seizures as my dosage was adjusted.  For months, my overall pain level was increasing and some days I spent in bed from fatigue.

Later in 2008.

I found a naturopath because I thought maybe it was chemicals, or heavy metals, celiac or my thyroid.  After a litany of tests, my doctor said there was nothing wrong with me.  She did no rheumatic tests, so autoimmune disease wasn’t considered.

I went back to my original family doctor.  By this time, he’d heard 3 years of my complaints and thought maybe it was due to fibromyalgia.  I failed the “tender point test”, so he sent me for an ANA test, sed rate and CBC.  My white blood cell count and ANA were elevated, so I was finally referred to my current rheumatologist.  He did an impressive number of blood tests.  Although many tests came back negative, the ANA and lupus anticoagulant (anticardiolipin antibody) test came back positive.  He said I had “some kind of” autoimmune disorder.  and put me on two aspirins a day for the lupus anticoagulant.  This was the first time I ever heard the word “autoimmune”.  The thought was that my neurological issues were related.

2009 – 2011.

My hands would have episodes of involuntary twitching.  Burning sensations in my legs and arms.  My regular neurologist referred me to a motor neurologist.  Twitching and cramping, burning and incoordination, difficulty walking, ataxia.  He ruled out ALD and we were all very relieved.  The diagnosis was “benign Fasciculation syndrome” and I was offered carbamazepine and baclofen.  No improvement.  My rheumatologist started prednisone to see if it helped the attacks — and it did…  Of course, I couldn’t stay on 60 mgs of prednisone so I was prescribed plaquinil and the pred was dropped to 15mgs a day.  I would have occasional flareups that landed me in bed.

2012.

I quit my stressful job to take another job working from home, with a bit of travel to install and support supercomputers.  It was great fun!  But I would have flares when I went out in the sun, when I physically worked too hard or had flares for no reason at all.  My flares would consist of mouth and nose sores, dry eyes, sores on my head, lots of easy bruises, tummy trouble, and extreme joint pain.  My baseline was feeling bad and it took me a really long time to get out of bed in the morning.  I took a lot of prednisone that year and was given a compounded pain cream and meloxicam (which do help). Bronchitis for around three months at the end of the year, but I kept working.

2013.

Since I have increasing pain, and flares around once a month.  I was offered compounded DHEA, a steroid sparing pre-hormone.  It helped a little.  I continued to have twitching, cramping and burning episodes, so I went to a specialist neurologist at Erlanger.  He did a litany of tests and said my muscle issues and neuropathies were likely CNS, rather than peripheral. There are incidental findings of multiple radiculopathies and carpel tunnel.  A lot of prednisone was used that year.

2014.

I stop sweating and sometimes overheat in parking lots just walking to the car.  The theory was that it might be related to my prednisone usage, so I start to taper and get down to 5mgs while continuing the DHEA and plaquinil.   Bed rest helps with flares.  I think maybe my physical job is causing some of my problems, so I start my search for another one.  Neurological issues, dryness, sores, bronchitis.  Joint arthralgias get worse.

2015.

I’ve stopped sweating completely and I get sick when I go outside.  My face rash gets bright within minutes, stays for a day or longer each time, and this all triggers more flares.  We think the anhydrosis might be a side effect of Topamax, so I wean off of topamax and on to lamictal, with a few side trips into other anticonvulsants that were no good for me.  Lamictal seems to work and sweat is restored – a little.  Some sweat is better than no sweat.

Still sick often with fleeting fevers, bronchitis half the year, joint pain, nerve pain and neurological symptoms.  Pain stops me from being able to continue the physical job I loved.  I go to work for another place, a seated job.  But now I have to get up early in the morning.  Seriously difficult since I don’t sleep well due to pain.

2016.

I weaned off of taking daily prednisone.  Hair in the wrong places prompts me to also wean off of DHEA. I get bronchitis for the first three months of the year.  One day my elbow swells over night and looks like I implanted a golf ball, so I take doxycycline for a little over a month.  Since that wasn’t working, they give me levoquin, and after three days, several tendons bruise.  Levoquin is discontinued and I eventually recover from my swellbow, though it still hurts. I continue to break superficial blood vessels in my hands and feet.

Eyes are dry.  Mouth is parched.  I crack two teeth and get several cavities.  It’s taken 6 months to get most dental work completed, but I’m still waiting for one permanent crown because I’m slow to heal from a crown-lengthening.  Eye doc won’t prescribe contact lenses.   That’s ok – I haven’t worn them in about a year anyhow.

July 2016.

I got my Sjogrens diagnosis:  “Primary Sjogrens, with CNS involvement”

And darn it if I’m not back on prednisone!

Update September 2016.
I’m still waiting on that permanent crown.

 

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