The path to diagnosis – 2011 to 2013

My last post talked about the pre-diagnosis years – 2008 to 2011.  That’s when I was having symptoms but hadn’t yet been diagnosed with an autoimmune disease.

It was March 2011 when my doctor called and told me that I had Rheumatoid Arthritis.

The Friday before that call was when the nurse had informed me that I had a nodule on  my thyroid that was 1 inch by 0.5 inch by 0.5 inch.  I spent the entire weekend freaked out about that.  I googled, I worried, I imagined surgeries and malignancy (both of which happened within a couple of weeks, by the way).  It was your pretty typical diagnosis freak-out.

Then she called Monday night and told me that I had Rheumatoid Arthritis.  All of the sudden the thyroid problem didn’t seem so bad.  Heck, they can take it out and give me meds to replace what a thyroid does and I can live long and happy.  Yes, there are annoying things about it (like when my dose isn’t quite right for the meds and I end up having symptoms of either hypo- or hyperthyroidism depending on if I’m high or low), but in general it’s definitely manageable compared to autoimmune diseases.  And even before I had done any research or learned anything else I knew that much was true.

The thyroid surgeries were taken care before I had my first (really second because of the one in 2008) with my rheumatologist, Dr. A.  I don’t remember a whole lot about it (I’ve had so many rheumatologist appointments by now that they’ve started to blend together).  But I remember being checked for which joints are tender, talking about my fatigue and pain and being given my first medication.

We never discussed there being other possibilities for a diagnosis.  We never discussed what other symptoms I might want to watch for if my condition wasn’t neatly described by the diagnosis of RA.  We just marched ahead with that diagnosis.  I know think about that and think it’s a little strange – I had the two most generic autoimmune blood markers present that could have been there for any number of reasons and yet it was never questioned that my diagnosis was RA.  I think that in some ways this set me up for mental struggles I’ve had with diagnosis struggles I’ve had since then (more about that another time!)

I spent March 2011 to January 2013 on going from one medication to another when one wasn’t working, or worse causing horrible side-effects or allergic reactions.  In all I went through 8 different sets of medications.  I’ll talk about the various medicines and how they went another time.  But it ended in January 2013 with a very scary allergic reaction that left me barely able to get to my bed from the bathroom after injecting it.

Unfortunately, it happened just as I was switching doctors.  Dr. A had been practicing in my town one day a week and the next town the rest of the time but had recently decided to drop the one day a week in my town.  That’s when I switched to Dr. B.  I’ll talk all about my issues with switching doctors, why I was ready for a switch and why it took Dr. A from dropping her practice in my town for me to actually switch.

I called Dr. B’s office first thing in the morning and left a message for the nurse.  I explained that I had not yet seen Dr. B but that Dr. A would be sending my records over and requesting that Dr. B’s office schedule an appointment for me.  I described my reaction from the night before and asked what I should do.  I obviously was never going to take that medication again, but I wanted to know if that would mean they needed to schedule an appointment for me sooner than if they’d thought I was happily proceeding on that medication (this was my hope, at least).

Later that afternoon they returned my call and let me know that since I wasn’t officially a patient of Dr. B’s yet that I needed to contact Dr. A to manage my care.  So I called Dr. A’s office and left a message with the nurse describing what was going on.  I got a call back saying that I shouldn’t take that medicine anymore (as if I would!) and to wait for Dr. B’s office to get my records, schedule me an appointment and call me back.  Great.  Just want I wanted to hear after that terrible night of a bad reaction!

About a month and a half later I finally saw Dr. B.  I went through my history and the list of medications we’d tried in the last two years, none of which had worked.  Dr. B suggested that we take a step back – that we redo blood work and take a fresh look at my diagnosis.  He felt that I didn’t have RA – based on the fact that although I have joint pain, I haven’t had joint swelling.  (More about how that made me feel another time!)

This was also the first time that someone had asked me if my eyes and mouth were dry.  By this point my eyes were so uncomfortable with my contacts in that I was slowly transitioning from wearing glasses instead of contacts only before bed and after I woke up in the morning to wearing them probably half the time.  He introduced me to the term “Sjogren’s Syndrome” and suggested that I go home and read up on it.

I went down for XRays of my hands and feet and blood work and three weeks later I was back in Dr. B’s office to discuss the results.  I had read information on Sjogren’s in the meantime and I was absolutely convinced that it played a role in what was going on with me.  But I still just relegated that disease to dry eyes and mouth.  I was certain that something else was going on to cause the fatigue and joint pain.

Based on the blood work, my history and symptoms, Dr. B felt that I probably had Sjogren’s and may have an overlap of RA or Lupus.  This was the first time Lupus had made it’s way into discussions of my diagnosis.  And it was a very scary word as far as I was concerned.  In fact I focused on it so much that I think that was part of why I was still in the mindset that the Sjogren’s only caused part of my symptoms – I never once considered it could be my only autoimmune diagnosis.

Dr. B sent me to an ophthalmologist for testing to determine the extent of my dry eyes and to confirm the Sjogren’s diagnosis.  And sure enough, the ophthalmologist confirmed that diagnosis!  Along with telling me that I needed to be prepared to never wear contacts again because my eyes had been so chronically dry for so many years that I was doing damage to them by wearing contacts.  (More about this later!)  He tried punctal plugs (basically they stop the hole through which tears drain out of your eye in an attempt to keep them around longer in my eyes).  I hated them – I could physically feel them and they caused pressure that gave me headaches.  Thankfully they were the kind that dissolved and when I went back in a week to check on them we agreed that they weren’t for me and he put me on Restasis to help with tear production.  I was sent out with a prescription and a follow-up appointment in a year.

In the meantime, Dr. B had put me back on the medication that I had taken second during my first two years post-diagnosis.  I had been on it for 4 months that time and it hadn’t worked for me.  He said I needed to be on it longer – like six months – so I went back on it.  Along with prednisone (I’ll discuss my issues with prednisone later, too!).

By that point it was the end of April.

In October I went for a second (or I guess really a third) opinion at KU Med.  That part of the story isn’t complete yet – I go back in a week or so to discuss the results of all the test they’d ordered after going through my history and symptoms with me…

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