It is a mystery

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Have you ever been a medical mystery? Ever left medical professionals scratching their heads as to what’s wrong with you?

Two years ago, it was only the efforts of a very thorough GP that forced other sceptical medicos to discover the pain I’d been feeling for weeks was due to a pulmonary embolism (blood clot on the lung). To be fair, I didn’t have any of the key symptoms. I was a fit, healthy, normal weight, non-smoker who had not incurred an injury or been overseas within the required window of time. And yet, to the bafflement of many, there it was on the CT scan. It still remains a mystery as to how I got it.

Back in January, I noticed a lump under my left eye. I bet you can guess where this story is going to go…

First best guess was a type of stye called a chalazion. Heat treatment and massage did nothing so off I went to an ophthalmologist to drain this stubborn cyst. He was doubtful of the diagnosis but figured it worth a try. He sent me off to work the next day looking like this (peeling back your eyelid and poking around in it with something sharp will do that):

The Husband was concerned people would think he’d been hitting me but I pointed out that working in Special Ed meant that colleagues were more likely to assume an incident with a student.

Next came blood tests, an ultrasound and an MRI with the revelation that we were dealing with one large mass that spread into my eye socket.

So I was passed on to a second ophthalmologist with the requisite skills for a hospital procedure under general anaesthetic to extract tissue for a biopsy which fortunately ruled out lymphoma after an agonising 6 day wait for results.

Next best guess? Sarcoidosis – an inflammation disease rare in the eyelid and more likely found in the heart and lungs.

More blood tests and a trifecta of scans with the addition of a CT scan of my chest came next.

The contrast dye missed my vein and pumped straight into my arm tissue. It’s one way to gain a large bicep but I don’t recommend it.

There was an on again – off again prescription of high dose steroids until it landed on the off side when the tests came back clear and a respiratory specialist threw cold water on the sarcoidosis diagnosis.

Having exhausted the expertise of my second ophthalmologist, I was referred to another with eyelid specialism at the Eye and Ear Hospital in the state capital.

The answer from that appointment?

So after more than three months of appointments, tests, scans and procedures and consultation with three GPs and three ophthalmologists, I’m left with “Let’s just leave it and see what happens.” To be fair, it’s benign, not painful and since the tissue sample was taken from the most protuberant part of the lump, it no longer impedes my vision so I guess I can live with…

All this is to explain why I’ve hunkered down this year and not been around much {both in the blogosphere and in my real life). All those appointments and procedures without answers take a mental toll and life has become about getting through each day by going to work (my happy place) and then escaping into binge tv on the couch at home. I’m still running but long distance endurance running is a mental game so the latest marathon training has not gone well. I’m ready for a break after this next race in two weeks.

It’s not all bad. I’ve been lucky. Each stage could have revealed a terrible answer but I’ve escaped with a basically harmless if annoying condition. Not everyone is so fortunate.

So what’s your mystery illness story? Feel free to share in the comments.

41 thoughts on “It is a mystery”

  1. It really is a mystery isn’t it. My husband has a skin condition on his face which has been a mystery for the past two years. Now his eye is puffy and the doctors think it’s related to the redness on the face, that none of them have been able to diagnose. Incredible isn’t it, how the medical profession knows so much and yet so little. I hope it clears up for you. Take care.

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  2. Love the Shakespeare in Love clip, but not rest of the post. Yow, that is pretty awful. As yous say, at least it is benign, not painful and isn’t impeding your vision, so…Hopefully the mystery will deepen and it will just go away with no explanation…

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    • I always think of Geoffrey Rush’s line whenever I call something a mystery so it just had to put that in. (Always laugh out loud at the “The show must… you know…” , “Go on!”)

      It is easier to leave it now I don’t have it in my line of sight so I’m more accepting of the wait and see.

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  5. Not good 😥 but at least you know it’s not bad either. I am squeamish with anything to do with the eye – I once had a cyst removed from my eyelid. I had one on my top eyelid but before I got a hospital appointment (18 months), that one had disappeared, but another one had ‘luckily’ appeared on the lower lid! Since then if I get one I leave it to its own devices. Hope your “whatever it is” goes away too! Good to know you are still working and still running.

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    • Things around your eyes are worrying for anyone really. Sight is one of our key senses. When the lump was sitting within my line of sight I had more than one meltdown when it all got too much not seeing properly day after day. It would have been hard to just wait like that but I’m so grateful to the specialist who took the sample from that part of the lump so it’s less noticeable. It makes it easier to sit tight and see what happens.

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  6. I have no doubt this has been so exhausting for you. No matter how much we try to be calm when we are experiencing some sort of health issue, it still causes a tremendous amount of stress navigating the medical system & not really getting a definitive answer. Lovely to hear from you💕

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    • It’s hard when you’re a naturally shy introvert. My anxiety has given my body a run for its money. Work has been a good distraction. I even worked right up to when I was due at the hospital for the operation. 😄

      In some ways I’m less stressed now there’s no appointments on the horizon. Even anticipation can be stressful.

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  7. I hit ‘like’ on this post, but seriously … yikes!! Pulmonary embolism, mystery lump in the eye, baffled specialists … this is all scary stuff, but as you say, at least they seem to have ruled out the ugly stuff. Meanwhile, you remain a mystery … at least to the medical community. I think the rest of us however, have already figured you out as ‘good people’. 🙂

    It was so nice to hear from you. Stay well!

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  8. I’m sorry to read this; I really feel for you having to go through all the diagnostic stuff (even without the oops we missed the vein but), and have no answer. I have endometriosis, and was really looking forward to menopause and the promised shrinking of cysts. It didn’t work that way. After multiple scans, blood tests and an op, they think they’ve ruled out the really nasty options, and since the endo is too extensive for a hysterectomy (certainly a publicly funded one) it’s a case of “suck it up” / “wait and see”. Luckily I’m not in particular pain, and like you, and kind of relieved not to have more appointments and interventions hanging over me.

    Hope your medical mystery either disappears, or stops being mysterious — and is benign/treatable.

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  9. How ghastly for you! I guess the good news is that it’s none of the very nasty options they thought it might have been, but it must still have been very difficult for you to undergo continual procedures with no satisfactory outcome. I’ve never had a medical mystery but ten years ago had a medical incident during surgery which was very nasty. My beautiful surgeon, who was so compassionate and caring, did much research afterwards and told me it was literally a one in a million reaction – I told him I would have preferred a lotto win!

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    • I’m so glad you had such a caring surgeon in a terrible situation like that. It would have helped I imagine. And you’ve also proved that there is so much about the human body that we don’t really understand. It can be nice to be a one in a million person but not in that way.

      I’m very much a ‘tie up all loose ends and seal it with a bow’ kind of person so this non-resolution has been hard. It’s a constant feeling of being in limbo. But I’d still rather have that than a definite diagnosis of something nasty.

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  10. So sorry to hear of your health mysteries. As my GP has often told me, he can recommend treatments that work for most people, to some degree. Each body is unique and what works for one, might not work well for others!

    My Doctor has also said that the stress of the past year is and will manifest itself in multiple ways for years to come. Covid will take a toll, but the collateral damage of government response to Covid – lockdowns, the unrelenting fear, the uncertainty of it all, etc, etc – most certainly is and will continue to cause a decline in health for a huge swath of the population.

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    • That’s an interesting point about the health impacts of the pandemic beyond just the virus. Here in Oz, we’ve been much more fortunate than many other countries in the length and severity of restrictions but last year was still very stressful and perhaps this is my body reacting.

      It’s possible high dose cortisol steroids could remove this lump but the side effects are so severe that my specialist was reluctant to prescribe them without knowing for sure they would work. Even if there are treatment options sometimes on balance they are not the best choice.

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  11. No wonder you haven’t been on the blogosphere this year. I understand how health issues can make a person emotionally sad and tired, but not knowing makes it even more difficult. I’m extremely glad this has turned out to be a benign unknown rather than a nasty known.

    Know this – you are a strong woman, H! I shall cheer you on with the upcoming race and send virtual hugs and a fist bump to you.

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  12. Goodness me you have been through the medical wringer. It is not fun when there is so much uncertainty about the cause of an ailment. Modern medicine is full of miracles and we come to expect that a pill or surgical intervention can cure or at least rectify most things, and when they aren’t sure, it is like being thrown in the ocean without a life jacket. I am glad that you feel in a position to write again. I can understand that binge TV is a great distraction in times of high stress. It takes one out of one’s head and those spiralling thoughts. Hugs that the eye issue resolves without further need for intervention.

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  13. I’m sorry to hear about this frustrating and exhausting journey. I think the not knowing is a draining experience in every aspect. hoping the mystery eye issue disappears as inexplicably as it arrived. Sending hugs across the miles.

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    • The not knowing has definitely been the hardest part. (Although I did have a meltdown at work one day because I was so over not being able to see properly. So I’m glad that the biopsy at least gave me back unimpeded vision.) I have to have another MRI in July to see if there’s any change so we’ll see where I’m at then.
      Thanks Sue. ❤

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  15. I’ve been a walking, talking, breathing mystery to doctors since 2008. I have a rare type of emphysema caused by breathing toxic fumes. I was supposed to die by 2014 but i am still here. I understand how you feel and the frustrating dr appointments.

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  16. Man, that sounds frustrating. Not knowing is tough. The contrast into the arm instead of the vein? Oh my! I received multiple misdiagnoses before we nailed down my situation. I lucked into something rare. LOL Not benign, unfortunately, but there are treatments. I hope it all somehow resolves for you and husband even before the summer trip.

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