Musical Diagnoses

I began noticing symptoms in early 2008.  I was diagnosed with Rheumatoid Arthritis in March 2011.  That’s three years of wondering “what is wrong with me?”  That’s hard on a person.  You doubt yourself – are you really feeling these things or is it some kind of personal flaw?  Are you really fatigued or are you lazy?

I’ve read other peoples’ descriptions of the relief they felt in finally getting a diagnosis and I agree.  Yes, it’s a terrible disease and there’s a long list of other health problems that I’d trade my autoimmune issues for if I HAVE to deal with health issues.  But it’s still a relief.  It affirms that it wasn’t all in your head.  It gives you something to focus on, to learn about, to conquer.  It lets you know what treatment options might be effective.  Autoimmune diagnoses do open up a whole new bag of concerns, worries and stresses, but it’s still a welcome event in the process.

So imagine what it’s when you’re told that the diagnosis that you’ve had for two years is likely not what’s wrong with you at all.

You’ve focused on that disease – its facts, its symptoms, its prognosis, its treatments.  For two years.  You’ve accepted it and are doing your best to live with it.  It’s become a part of your identity.  You’ve taken 8 different sets of medicines for that disease – some to which you reacted badly, and some were widely expensive.

And now it’s gone.  Added to the original 3 years of non-diagnosis period.  Only worse, actually, because you’ve invested money, time and your body (by undergoing treatments) to that disease for nothing.

When Dr. B suggested at my first appointment with him that I likely did not have RA I actually felt very defensive.  It was a part of me by then and he was saying it wasn’t valid.  I started justifying why I felt that I did have it – the pain, the two years of treatment.  Surely I wouldn’t have been treated for something for two years if it could be discounted as easily as saying “but in all that time you’ve never had joint swelling – just the pain.”  If it was that obvious then shouldn’t it have been noticed before now?  How had I gone this long without that being brought up?  That couldn’t be right.  And therefore I took it defensively, almost personally.

By the second appointment with Dr. B (three weeks after the first), when he began discussing the results of my new thorough blood work I was ready to accept that maybe there were other issues going on with me.  I was pretty sure from the research I’d done in those three weeks that I had Sjogren’s Syndrome.  But surely that wasn’t it.  Surely there was something more to this joint pain.  Maybe I just hadn’t developed the swelling hallmark of RA yet.  Maybe they’d caught it “early” enough in my disease progression that it just hadn’t happened yet.  And besides, every where you look information is constantly saying that the reason autoimmune diseases are so complicated is because they can manifest so differently in each person – it’s such an individual process.

So when he said that he felt I had Sjogren’s with a possible RA or even Lupus overlap, I was more comfortable with that than when he’d pretty much said I didn’t have RA during the prior appointment.

But then I reacted to this information in a way that was just as strange to me, intellectually, as the defensive way I’d reacted during that first appointment.  I didn’t want to really tell people that’s what was going on with me.  When I first got the diagnosis in 2011 I shared it with family and friends.  Many had relatives or other friends that had suffered with RA and expressed their sympathy to me.  From time to time I’d share my pain or bad reactions to medication on Facebook or with a friend when they asked.  I did so more frequently in the beginning than by the time I switched to Dr. B in 2013.  This slowing of sharing of information was for several reasons – I didn’t want to “wear out my welcome” as I know everyone has struggles and I didn’t want people to constantly be hearing about mine and also because I was often tired, cranky and hurting.  Not only did I not talk about my health struggles as much with people but I just didn’t talk to people as much anymore.  (I’ll talk lots more about how this journey has effected my relationships later in future posts).

So I felt like people had spent two years aware that I had RA and that I was undergoing various treatments for it.  I somehow felt ashamed by now having to say that it had been the wrong diagnosis all along.  It somehow felt like I had raised money by telling people for my kid’s ball team but then used the money to go shopping for myself – OK, maybe not THAT bad, but that’s the general feeling I’d felt.  Like I’d cashed in emotional credits for something that hadn’t even been wrong with me.  I know, in my head, that life doesn’t work that way – that no one would blame me for being misdiagnosed.  It’s not like it was MY fault it happened and I knowingly mislead people.  It’s not even like I mislead people – I told them the truth as far as I knew it at the time.  I expressed my reality to them.

But just because I know things in my head doesn’t mean they are the things that influence my thoughts and actions.  So whenever someone would ask for an update on what was going on I would casually mention that now I also had this “Sjogren’s thing” but “with an overlap of RA and possibly Lupus.”  And the first part of that sentence was almost always said with a quick, almost waving it off attitude, while the last part of the sentence was emphasized.  I’m slowly getting better at this – and being able to publicly write about it is evidence that I have made progress – but I still have this irrational feeling of guilt at “changing my diagnosis.”

I’m a mess.

And this game of Musical Diagnoses has had another effect on me.  I’ve become wary of diagnoses.  Maybe I should have been a little more wary the first time.  Maybe I should have asked more questions, sought another opinion (I’ll talk about my issues seeking other opinions another time!), or in some way pressed more to be sure that RA was truly what I had before we proceeded with two years of treatments.

But that’s the problem with autoimmune diseases.  There’s no clear cut diagnosis method.  There’s over 80 autoimmune diseases and they mimic each other.  They have symptom and blood marker overlap – several different diseases could result in similar blood test results.  There are some tests that are more specific for one type of disease – such as the SS-A and SS-B antibody tests for Sjogren’s – but even they aren’t cut and dry.

Let’s use that as an example.  (Warning – here comes my math-nerdiness in all its glory!)

They say 70% of the people that have Sjogren’s test positive for this antibody.
If we go with the number of Americans with Sjogren’s (4 million), that means that 2.8 million people will test positive for SS-A.
But the flip side of that is that 1.2 million people that have Sjogren’s will NOT test positive for SS-A.

They estimate 40% of the people that have Sjogren’s test positive for this antibody.
Using the 4 millions Americans with Sjogren’s, that means that 2.4 million Americans will NOT test positive for this antibody.

So over 4 million people may have a disease even though when they have negative results on a blood test for it.  I don’t know about you, but that’s a big chunk of people.  I definitely wouldn’t want to rule out Sjogren’s simply because my blood test was negative – I could be one of those 4 million.  (Hence the reason that all doctors should ask the simple questions about dry eyes and dry mouth when patients complain of fatigue and joint pain!  Those other symptoms may lead to further testing and diagnosis despite a negative anti-body blood test).

So you might be thinking “But you tested positive for both SS-A and SS-B, so you’re not one of those people that might undiagnosed because they have the disease by don’t test positive for the antibodies!  What are you worried about?”

Well that’s true.  For Sjogren’s.  But what about the other antibodies for which I’m currently testing negative that are used to diagnose other autoimmune diseases?  Maybe I’m one of the people for THOSE diseases that actually has the disease yet doesn’t show the blood markers.  Or maybe my antibodies just haven’t built up enough yet.  For example, in 2011 I was negative for anti-dsDNA (a marker for Lupus) but in 2013 I was positive for it.  Does that mean I had it in 2011 and it just wasn’t showing up?  Or does that mean that I didn’t have it in 2011 but that I do now?  Do I even have it now (Dr. B still says it’s a “possible overlap” – he’s never given a true diagnosis of it)?

At first I was too trusting of my diagnosis.  They said I had RA, so OK..that’s what I’ve got and that’s what we’ll deal with.  But now, after two years invested in that I’m now told probably not, it’s probably this other thing with maybe this third thing overlapping.  Now I’m starting to move towards the distrusting side – when will I be able to take a diagnosis and feel confident with it?  Will I reach a point where I can say “this is what I have” again or will I constantly be worried about new symptoms and new diseases (which could lead you down the slippery slope towards everyone thinking you’re a hypochondriac)?

Why does it even matter what my diagnosis is?  Many of these disease are treated with the same drugs (basically that’s an artifact of the trial and error with which these diseases seem to be treated – more on that in a future post).  Why does it matter that I know exactly what diseases I have and if I develop new ones along the way that those are identified as well?  Because although they can mimic each other in symptoms, they do have different consequences.  For example – the RA and Lupus both have joint pain.  But RA’s joint pain is caused by a process that if left un-checked will result in the destruction and distortion of joints (typically seen in the twisted fingers of many sufferers).  Lupus does not lead to this.  However, Lupus has other consequences for internal organs that need to be monitored (such as kidneys) that are different from RA.

Where’s the fine line between being satisfied with a diagnosis enough to feel that settled and relieved feeling that I described earlier that comes with finally having a name for what’s going on, and being too settled that you won’t notice or find other things that are going on that need attention as well?

4 thoughts on “Musical Diagnoses

  1. I do not know if my rheumatologist is moving forward or giving up, but now his office notes refer not to RA (my original diagnosis in 2011) or secondary Sjogren’s Syndrome (my additional diagnosis) or primary Sjogren’s Syndrome (which he thought I had when I first saw him in 2013), but simply “Connective Tissue Disease” or CTD.

    1. I just wrote about that in a chapter in my upcoming book! It’s almost demoralizing to be diagnosed “Connective Tissue Disease” – to me it feels like a “throw your hands in the air and give up” diagnosis – when you have bits and pieces of many things but nothing they can find in it’s entirety! How do you fight that? How do you work towards accepting and moving forward with something that’s so vague and catch-all!? Stupid autoimmune diseases!

      1. Hi! I found your blog after finding “Reasonably Well” blog after figuring out my birth mom had Sjogren’s – from what I can tell fairly seriously. Her teeth were falling out of her mouth in her 30’s. It was never diagnosed, she passed in 2006. I put all the pieces together a few months ago with information from my brother and sister.

        I was diagnosed with Undifferentiated Autoimmune Disease in 1990. Being adopted I started to search and along the way found an older brother (also adopted) whose daughter was diagnosed early 1990 with lupus – in hospital with large doses of prednisone (this was before they started using chemo). Last I checked, she’s in remission and has been for a number of years.

        Finding out “the root” of my “auto disease” strangely gave me peace. It’s disruptive – last year my hands and wrists hurt beyond measure and I had to take prednisone

      2. Darn … Leaving comments with an iPad can be fraught with problems because of stray fingers.

        What I wanted to say was this: autoimmune disease (which my doc said was the term to use now) is very fluid. The pains and hurt you are feeling today may be gone from that location in several months and you think “OK, I’ve got it figured out!” And then it comes back and this time instead of your hands and wrists, it’s in your feet, ankles and knees.

        Many times I have thought “I’ve got this thing nailed” in terms of what to avoid and what to eat, only for it to rear its head again in another guise. Right now it tends to morph itself into something new.

        It was because of dry mouth and eyed and digestive problems that I started researching and sjogrens’s came up and hearing about birth Mom’s teeth falling out made me put things together.

        She went on to develop RA, but lived quite happily into her mid 80’s. And she continued working through out all of it.

        So it’s going to morph. Just keep prednisone on hand (I took plaquenil for 20 years but can’t now – prednisone has started cataracts, but not that I can tell) – I’m almost 66 and still working. I pace myself, get rest when I feel “that tiredness” and live a peaceful life. I’ve not been married for a long time – that helped me because the mental stress of not doing my part was hard on me. Now if my house is a mess,what the heck? In a week or two I’ll feel normal again and catch up!

        So the docs, I think, at this point in their knowledge of auto disease are avoiding being specific about diagnoses because they know it can, or may not morph. Avoid sun, walk down life’s road with measures steps and maintain.

        When first diagnosed my doctor said it might develop into MS – so it can go anywhere, and if it hits while you’re young you learn to notice symptoms of a flare and slow down, take prednisone and rest.

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