The path to diagnosis – 2008 to 2011

It’s been a very long, and meandering, path to diagnosis…and it still may not be done.  Although I have one firm diagnosis (Sjogren’s syndrome – which I talked about here), we’re not sure yet if that’s the only autoimmune disease I have or if there are others overlapping.

This first “path to diagnosis” post will describe 2008-2011 and then I’ll write another for 2011-2013…there’s so much that I just feel like I should break it up! Also, the 2008-2011 time frame was before my official autoimmune diagnosis.  2011-2013 is my “musical diagnosis” portion of my history and I feel like that’s a separate story.

I first began experiencing extreme fatigue during the spring of 2008.  At that time the kids were 2 & 4 years old, I was teaching high school science and I was still married to my ex-husband.  I would push through work during the week and taking care of the kids each night and I’d get to the weekends and my body would give out.  I’d lay down on the couch and fall asleep and not be able to drag myself out of it.  I went to my primary care physician (PCP) that fall for my annual appointment and talked to her about my fatigue – I knew something wasn’t right with me.  I knew this was more than “you have 2 little kids and work hard” tired.  This was deep-down fatigue.

My PCP listened, as I feel like she always does (one of the reasons I love having her as my PCP!) and ran some blood work.  She found some things and sent me to a rheumatologist, we’ll call “Dr. A” (as I’m now on my second and third – “Drs. B & C”).  I was nervous – as the need to go to any specialist tends to make me, and I would guess most people.

In March of 2008, Dr. A gave me what I felt like was a thorough exam.  She told me nothing was wrong with me and it was probably just “life stress” that was causing my fatigue.  I knew it was more than that, but I tend to (like I think most people do) try to take what a doctor says as correct.  So I went on my way, knowing that the fatigue I felt wasn’t right but with nothing to be able to point to in attempts to try to explain it.

Fast forward 3 years – to spring of 2011.  Lots had changed in my life – divorce, new house, new job, I was engaged to a wonderful man.  Yet the fatigue had never really left – I would go through periods of time that were better than others, but it was never really gone.

And now I was having heart palpitations.  Often.  Enough to freak me out – especially considering that I knew two people my age that had died of heart attacks in the previous two years.

I went to the walk-in health clinic on night because I was worried enough not to wait until my doctor’s office opening.  The doctor there listened to my heart and asked about my symptoms and felt like it wasn’t really anything going on with my heart.  She suggested it might be thyroid related and had my blood drawn.  I remembered that at my annual exam the year prior my PCP had noted that my thyroid felt large and was going to refer me for a sonogram.  But somewhere along the line that referral got lost – the office referral department never called me with an appointment (which is how my doctor’s office operates…the referral department calls you with an appointment scheduled with the local hospital).  I forgot about it.  Until this walk-in clinic doctor mentioned that my palpitations may be caused by thyroid problems.  She said she was going to refer me for a sonogram as well.

That referral office never called back, either.

About a week or so later the palpitations where so bad and consistent that I went to the ER at night.  They hooked me up, monitored my heart, took a bunch of blood and pulled up the results of the thyroid test the walk-in doctor had ordered for me.  They said the thyroid test were fine.  They said they could see the palpitations that I was having on the monitor but they weren’t the kind that causes them to worry, that some people have them their entire life.  But what did cause worry was why I had started having them all of the sudden and so frequently.  So I was sent home with instructions to make an appointment with my PCP.

My PCP began several rounds of blood work – each time she’d find something unusual she’d order a more specific test, based on what she found.  I felt like a pin cushion!  She had me wear a heart monitor for a few days.  And I finally got scheduled for that thyroid sonogram.

Turns out I had a nodule on my thyroid – and even though my thyroid labs were always normal, it was large enough that the surgeon felt it should come out..  They took it out and the heart palpitations stopped that day and I haven’t had them since.  Yay, problem solved!

Only the real problems were just beginning.  In the process of pulling all the blood work to solve the mystery of my heart palpitations, my PCP found that my sed rate was high – that’s a measure of inflammation in the body but it’s very non-specific.  Lots of things can cause that.  So then she drew blood to test a variety of things that could be causing it.  She found my rheumatoid factor was high.

She called.  Herself.  After office hours.  When I answered the phone I knew that couldn’t be good as usually nurses call you – and even then they only call if things aren’t good (like when the nurse called me 15 minutes after I’d left the sonogram the week before after the technician had told me it would take several days for them to read the sonogram and get back to me…I knew that wasn’t good either!)  When things are normal they just send a letter.

She told me my rheumatoid factor was very high and said “You have rheumatoid arthritis.”  She said she was setting up a referral to a rheumatologist.  The rheumatoid arthritis had nothing to do with my heart palpitations – it just happened to be found because of the searching we were doing for the cause of the heart palpitations – she followed blood work down another path and discovered this as well.  Had this not happened, I would have continued to explain away and fail to connect my various autoimmune symptoms (which right around that time started to include the joint pain but I was so preoccupied with the heart palpitations that I didn’t think much about it).

A couple of days after her phone call, I thought “hey, didn’t I go see a rheumatologist a few years ago?”  I called my PCP’s nurse to ask if she could copy any information about that visit for me.  She copied the letter that was sent from the rheumatologist (Dr. A) to my PCP after my visit in March 2008.

The first page and a 3/4 described the history and examination as well as my physical stats.  The beginning stated that she was aware that the original concern was fatigue and that I was referred to her office because of this and blood work that showed elevated proteins. I read through it thinking not much was going to help me…I already knew all of the things she was saying.

Then, there it was in the last paragraph.  A few sentences that reading now feels like someone has punched me in the gut.

In March 2008 she wrote “Polyclonal gammopathies [the type of proteins I had that were elevated] are usually seen in either infections or autoimmune inflammatory diseases.  This patient doesn’t give a history that is very suggestive of infection and there are no clues on examination to know where to start looking for one.  Likewise, she does not have historical or physical findings of any of the usual rheumatologic autoimmune disorders.”

But I DID have two physical symptoms – extreme fatigue and these elevated proteins.  I felt like if I’d pushed harder in 2008 maybe I’d have had a three year head start compared to where I was now, just beginning this journey in 2011.

And now that I know even more about what I have, Sjogren’s syndrome, I’m even crankier when I re-read this paragraph in the letter from 2008.  Because although I didn’t put it together in 2008 or even 2011, I’ve now figured out that I not only had two physical symptoms but that I had 4 even back in 2008!

See, 2008 was also the year I began complaining to my optometrist that my eyes were so dry that my contacts were uncomfortable.  She changed brands and was sure that would fix it – I even remember the phrase she used “These are so comfortable that you’ll think I’m a goddess for how great you feel.”  It only barely made it more comfortable, but I didn’t push it any farther…after all, these were the newest, latest, greatest contacts on the market.  Clearly I should be feeling great in them, so if I’m not I’ll just keep my mouth shut.  I know.  That’s completely messed up.  But somehow the fact that I “should” feel great in them kept me from speaking up that I “didn’t” feel great in them.

I also know that I had dry mouth then, too – it’s been many years since I’d been able to take a bite of food and swallow it without taking a drink along with the bite.

There’s no way I could have put together the symptoms of fatigue, dry eyes, dry mouth and elevated proteins and known they were all symptoms of the same systemic disease.  How would I have ever known to associate those things together – they seemed so unrelated.  And at first I think “well, then why does it upset me that Dr. A didn’t put it together in 2008 either?”  And for that matter, Dr. A never put it together – it was when I switched to Dr. B in March 2013 (5 years after my initial encounter with Dr. A) that I was first asked if I had dry eyes and dry mouth.

It upsets me because Sjogren’s syndrome is one of the most common autoimmune disorders.  And rheumatologists are exactly the specialists that you go to (along with optometrists or opthamologists and dentists – to treat the eye and mouth symptoms).

So I was in the office of the right type of specialist, with the symptoms of one of the most common autoimmune disorders and she never thought to ask me if I had dry eyes or dry mouth.  I have two and a half pages of her description of my exam from that day and no where in there is there any mention of asking about these things.

Like I said, I now realize that I really had FOUR physical symptoms in 2008 – fatigue, dry eyes, dry mouth and elevated proteins. Makes me cranky.

Lessons
For patients:
Push.  Just because something is supposed to work great for you, don’t sit back if it’s not (like my dry eyes and my contacts)!  Seems pretty obvious, but apparently it wasn’t for me.  And if you know something isn’t right (like my fatigue) don’t stop pushing until you feel like you’ve exhausted all the possible options.  Don’t just take the first “there’s nothing wrong with you” and slink back to suffer in silence!

For medical professionals:
4 millions Americans are diagnosed with Sjogren’s and it’s estimated that another 3 million are suffering yet undiagnosed (for reasons just like I’ve described above – how are people that have never heard of it supposed to connect together seemingly random symptoms?).  If someone complains of fatigue or joint pain…go ahead and ask if they have dry eyes and mouth.  They might not, but it takes 2 seconds to ask and it might just save 5 years (the average length of time it takes to diagnose someone with Sjogren’s).

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