Friday, 9 December 2016

Sharing My Medical Misdiagnosis and the Importance of Getting a Second Opinion

Medical Misdiagnosis: Why it's so important to get a second opinion |  Not Dressed As Lamb

A couple of weeks ago I went to see a spinal therapist about my leg after being referred to her by my GP to find out why it was still sore nearly a year after my injury. 

I'm sharing my medical diagnosis this week because I wanted to highlight the importance of getting a second opinion where your health is concerned... I've just had a bit of a shock!

A quick recap: In November last year I went to Paris for 24 hours for a blogger event. After catching a train to London and carrying my overnight bag around on trains and the tube and the Eurostar I went to the doctor the following week with what I thought was a torn hamstring. She told me I'd slipped a disc and had sciatica, a condition which causes the sciatic nerve (the one that runs from your bum all the way down your leg to your foot) to be nothing short of, well, f*****g painful and debilitating.

And so I was unable to walk unaided (without help or a stick) for about six weeks, which made Christmas not much fun at all (and neither was I much fun at Christmas). I wrote about the experience explaining why you should never take being able-bodied for granted if you wanted to read more about it.

Fast forward to Spring 2016: I was pretty much healed, back to running and exercising and my usual jumping about (yes, I'd still run around like a 6 year old if I had the energy of a 6 year old... I try, but forgot I'm more than seven times that old and get tired incredibly quickly). I had acupuncture, I had physiotherapy, my leg felt better by a tiny bit every day so it was very, very gradual - but it did get better.

However, one of the effects of my injury was a numbness around the back of my leg, specifically the knee area. The doctor told me it would be the last thing to get better, so I accepted that and waited for it to just go away.

I REALISED WAS THAT IF I WAS BEING HONEST WITH MYSELF, MY LEG REALLY WASN'T BETTER AT ALL. ALTHOUGH I'D APPARENTLY SLIPPED A DISC, THERE WAS ZERO PAIN IN MY BACK, ONLY MY LEG. 

And I waited. And waited. And waited... Until it got to late summer, when I realised that although the numb area had definitely decreased in size, it was still totally numb just behind the knee. You could scratch nails up the back of my knee and I'd only know it was happening because I was sensing some sort of pressure. And if anyone poked or pressed me behind the knee it was incredibly painful.

I realised was that if I was being honest with myself, my leg really wasn't better at all. Although I'd apparently slipped a disc, there was zero pain in my back, only my leg. (The doctor said that was quite common with sciatica.) But I could no longer do squats because bending my right leg and exerting any kind pressure on the bent leg was seriously painful. I couldn't squat and reach down to get things that were low to the ground (like getting something out of a bottom kitchen cupboard, for example) without having to stretch my right leg out straight. I used to be able to squat with my feet flat, knees together and buttocks resting on the backs of my calves no problem at all, but no longer - it was too painful.

So in the autumn I saw my GP again and was referred to a spinal specialist - I had to wait several weeks for an appointment but I didn't mind the wait. I just wasn't sure what to expect - I have heard some people with sciatica put up with it for years, or have to have surgery... I had no idea what she would say about it.

I definitely didn't expect what she did say, however - talk about knocking me sideways.

She got me to do lots of walking on tiptoes tests, stretching my legs out in turn, squatting, all those sorts of things. Lots of prodding of the back of my knee which was pretty horrible.

I was lying on my tummy while she examined the back of my knee and mentioned something about the sciatica, and she simply said,

"It's not sciatica."

What the WHAT?!! Not sciatica? Then what the bloody hell was wrong with my leg?

To cut this very long (sorry!) story short - she said she'd only ever seen one other person with what she thought it was, and that was a growth in the back of my leg. That person had a benign growth, and she said it sounded worse than it actually was in the end. It could also be a tear, but she said the only way to be sure was to have an MRI scan (god bless the NHS for being free).

And apparently doctors often diagnose sciatica when it's not sciatica at all (FFS).

Something in my leg, rather than sciatica, would explain why I had swelling in my right calf that I'd basically been ignoring all year. The outfit in the lead image is what I was wearing when I went to Paris that fateful day - I haven't worn those OTK boots since because I can't do the zip up on the right boot. The left is fine, but it proves that my right leg is swollen. So there was that, the numbness, the pain in my leg when squatting... I ignored all those things thinking that's just the way I was "going to be".


The moral of the story

This bit's easy: Don't ignore symptoms when you think something's wrong. Get things checked, and don't leave it for ages thinking they'll just get better like I did. Because I just accepted my "sciatica" I didn't really think about the fact that I wasn't totally healed.

I've now had the MRI scan and am awaiting the results. I'm having blood tests next week at the doctor (I've forgotten why I needed that doing, I was so taken aback when I was told it wasn't sciatica that I forgot most of what the specialist said), so I shall just have to wait and see.

So whether it's a pain in your leg, a lump in your breast or anything else health-wise that's just not right, please please PLEASE go and get it checked out. Fingers crossed my leg will be okay (I'm definitely not the sort of person who thinks "it won't happen to me" about things, but I am a glass half full person), but basically I'll cross that bridge when I come to it.

And as for second opinions... If you think you've been misdiagnosed - don't hesitate to get someone else to take a look at you. If I had I might have saved some money seeing a physiotherapist privately for several weeks and got an MRI scan on my leg a lot sooner.

When I have any sort of news I'll let you know...!

So after my medical ramblings, all that's left to say is... LET'S GET THIS [LINK UP] PARTY STARTED!!

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WHAT'S BEEN THE HIGHLIGHT OF YOUR WEEK THAT YOU WANT TO SHARE? TELL ME IN THE COMMENTS OR TWEET ME @NOTLAMB!


Catherine

P.S. Why Friday night? Because hopefully it catches most of my readers in their different time zones at a time they're all up!


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28 comments

  1. Wow! I'm so sorry about your misdiagnosis and that you had to deal with the pain, etc. for over a year and weren't treated correctly. I so hope everything will turn out okay. You are in my thoughts! And, yes, being proactive and getting a second opinion when things don't seem right is so important!!!

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  2. Sounds awful! I had sciatica when I was pregnant and it was truly excruciating. To think it was that and then find our it might actually be something else. Arrrgh! I hope you get a proper diagnosis and make a full recovery very soon! X

    Kat

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  3. thank you for sharing your misdiagnosis story. Getting second opinion is so important. Once when I went to see a doctor about intense back pain ( I have scoliosis) she told me that I was too fat and that I need to lose weight. My weight is perfectly normal btw, I never had an extra pound in my life! Fortunately I ignored her and went to see a private therapist who helped me out a lot with a series of treatments- best money ever spent!



    http://modaodaradosti.blogspot.ba/

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  4. So sorry you've been suffering with this and you are so right about second opinions and having to keep a check of your own health, so important. When my finger swelled up my husband was super calm as he always with and told me not to bother with hospital. I called 111 who said I had to get there asap and thank goodness as I was loosing circulation. Not my husband's fault, it ballooned soon after but checking, calling 111 or 999 when you need to is crucial, as is persevering when something doesn't feel or seem right. Sending you love and hope this is resolved asap x

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  5. Sorry to hear that Catherine, hope all is well soon, sending you love and positive thoughts.

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  6. Hope the tests show what doctors can do to help you, Catherine. You're right about not giving up when it seems as if a diagnosis doesn't seem right. We're lucky to have great sports medicine doctors at a clinic near us and we go there instead of our GP for anything back, hip. leg, or sports related. Then our fabulous physiotherapist usually gets to the bottom of the issue. I'm surprised your physio person didn't refer you onward when you had no real results from the therapy. Perfect storm of misdiagnoses. Hopefully this is the beginning of a solution for you.

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  7. A sobering tale. It's probably a horrifying statistic, the number of doctors who unwittingly make a wrong diagnosis. Hope it all goes well from now.

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  8. What a pain in the butt salad, as my Son would say! I hate to say it Catherine but we've all done it. Typical female behaviour I guess? But geez how right you are we must always be sure of the diagnosis & never ever take it as gospel, particularly if the symptoms aren't improving. I have my fingers crossed for your follow up appointment mate xxx

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  9. What a pain in the butt salad, as my Son would say! I hate to say it Catherine but we've all done it. Typical female behaviour I guess? But geez how right you are we must always be sure of the diagnosis & never ever take it as gospel, particularly if the symptoms aren't improving. I have my fingers crossed for your follow up appointment mate xxx

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  10. Have you ever read the book, "Cancer, Schmancer"? Fran actually went to like 7 or 8 different doctors. And really that's smart. Because as a retired dentist, I realize we only know what we know. It's impossible to know everything. So it's the best thing ever to get more than one (and sometimes two or three) other opinions!!
    Good luck Catherine!
    jodie
    www.jtouchofstyle.com

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  11. Thank you for sharing your story and the importance of a second opinion and following your gut instinct!

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  12. Wow! What a story. And I couldn't agree more about being persistent with doctors if you know something is wrong. I was sick for a year and a half and I knew something was really really wrong. The doctors couldn't figure it out for anything. I had test after test. Finally they just told me I had IBS...which is what they tell everyone when they don't know whats wrong with them. Eventually they did figure out what was wrong with me when I almost died on Xmas Day and another doctor looked at my case. Unbelievable.

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  13. Oh no...I'm so very sorry to hear about your health drama, dearest Catherine!! :( Even though I totally understand that medicine is not an exact science, it's a really scary thing to be misdiagnosed...or to be ignored when you have concerns that something just isn't right. My own DVT probably wouldn't have been nearly as serious as it was if I'd insisted on a follow-up visit with the orthopedic specialist after I broke my foot; but I naively listened to his office assistant's telephone advice that the symptoms l was experiencing were "normal." YOU are on your way to answers now, though; my fingers are crossed and my thoughts are with you!! Please, please keep us posted!! XOXO

    www.StyleIsMyPudding.com

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  14. Well the thing is that your doctor should have sent you for an MRI scan on the first place and not diagnose sciatica based on clinical examination. That thing happens in Greece too, the public health system is free but because MRI is expensive (around 300 euros) you have to be in a lot of pain to prescribe it!
    Good thing you finally got to do one in the end and I'm sure you'll get better answers and a good treatment plan!!

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  15. Sorry to hear this Catherine. I'm a great believer in taking control of your own health, after finding a lump in my breast in 2013 a year after a mammogram...It was cancer. The biggest favour we can do ourselves is to know our own bodies, what feels right and take responsibility for our own health. Read up, ask questions, go back until you are happy/better, find out what your are dealing with. I'm pleased you know now and hope you get it sorted soon.xxx

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  16. Thinking of you Catherine, fingers crossed that it's something easily put right. Good that you followed your own intuition in the end x

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  17. Everything crossed for a benign result Catherine. Thanks for writing this, it's always hard to second guess a doctor, especially with the NHS, it took me three months of complaining that I knew something was wrong with me before I got seen by a specialist to find out I had cancer. I was told that my symptoms and sub type were so rare a g.p. might see a case like mine once in a lifetime, blah blah blah, but as patients we are definitely starting out at a disadvtange of trusting often dismissive diagnoses. And just as importantly, as you say, is that thing we do where we accept things going wrong with our bodies as a matter of course. It is important to be aware, to seek out completion/our best possible healthcare, so thank you, and wishing you all the best for your test results. xo

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  18. Oh Catherine ... what an ordeal! I'm so glad you got a second opinion! Keep us posted, Dear.

    OXOX
    Dawn Lucy
    http://fashionshouldbefun.com

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  19. I am so sorry that you went through so much trouble all year :/ I couldn't agree with you more. When it concerns your health you should definitely get a second opinion. Stay strong and plz let us know how you are doing <3
    www.kmeetsstyle.com

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  20. Tell me about misdiagnosis. Mid October I went to my GP with a severe chest pain. He said I had inflammation of the cartilage between my ribs probably from over zealous Pilates. Take ibuferin. A week later I went to France and the pain was worse so I went to a GP there and the next day I was in a specialist cardiac hospital (3 days in intensive care) Am now fine thanks to the superb french medical system! They are so thorough there. This is the second misdiagnosis I have had in the UK.

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  21. I lost trust in doctors long time ago.They give you tablets for every complain and they don't want to test you for anything unless you're dying or something.For this reason I keep going to the doctor with same symptoms until they investigate properly. But I am seriously thinking of going private now.

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  22. I do hope you're able to have it treated and finally put it behind you. It's true, we do put up with things far longer than we should. I've had back pain for a long time - on and off for about five years, but the last year it's been very persistent. One physio told me it was due to tight hip flexors caused by running, but that was years ago so maybe it's time to seek fresh help instead of struggling to get out bed some mornings.

    Emma xxx
    www.style-splash.com

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  23. Sorry to hear about this...hopefully it will be something completely benign like a Baker's cyst, which are really quite common, especially behind the knee area. Sending you white light and healing. (p.s., I'm a nurse practitioner so if you ever feel like you're not getting anywhere, send me a note and I can send you some names and ask professional colleagues and whatnot.) - K

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  24. OMG I can't believe this, Catherine. It's awful! I've been diagnosed with sciatica before and it wasn't sciatica at all. Another doctor told me I was just stressed when I wasn't stressed at all (WTH?!). I hope you get your results soon and it's something simple to sort out.
    Hugs
    Suzy xx
    www.suzyturner.com

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  25. I'm so sorry to hear that you've had to go through all of this! I think in this day and age, we really have to be our own advocates and it seems like you have worked tirelessly to do just that. Thanks for having the courage to share your story Catherine.

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  26. oh gosh how awful?! I suffer from sciatica (and my symptoms are in line with what it should be =p) and reading your symptoms just kept making me think "this isn't right - this isn't what I have"
    thank god you've finally making the right steps towards getting a proper diagnosis!
    from Mrs Mummy Harris xx
    #brillblogposts

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  27. Oh dear, this sounds serious. What a good specialist you went to the second time! I will light a candle for it to be something which is easily "repaired". (You never know, it might help.😉)
    I am somebody who waits a week at most and then ask the GP what the hxll is wrong.
    Greetje

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