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red-rose-steph
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Hi,

I was injured at work a few months ago.  I have been off since as I have severe back pain  I have had 3 MRI’s to try to establish what the injury is.  After the first scan I was told I had an issue with the discs in my neck that were impinging on my nerves slightly.  Nothing surprising, I’d been in a car crash a couple of years earlier and had been experiencing symptoms ever since.  I was told there were some marrow changes and was sent for a myeloma screening. That was in August and came back normal/negative.  

My full spine MR came back as “looking beautiful” and couldn’t be better. So I was sent for an SI joint MR in November.

Yesterday I was told that I had marrow changes in my SI joint. However at this consultants appointment a nurse had been brought in. I was asked how my mental health was (terrible due to pain, issues at work and other problems in my home life) I was then told I needed blood tests there and then. That I was going to be sent for CT abdo/thorax/pelvis. I was asked if I checked my breasts regularly. I was in bits. I was completely blind sided. 

I was told the spinal consultant had said I could be admitted that morning to have scans as an inpatient. Chances are I’d be in a bed all weekend going out of my mind with no guarantee of the scans happening. I’ve got young kids and a lot to do for Christmas, so I politely declined and opted for this to be done as an outpatient. I was told to keep my phone on and I could get called in at any point, even on Christmas Day. 

I’m a nurse - nothing gets done this quickly unless it’s bad. But I don’t know what is going on. I’m guessing they’re thinking Leukaemia. 

the MR report had “possibly benign” so what is it they can see? 

I am spiralling out of control. I’m devastated and really worried. I’m not ill. I’m tired, but I’m a busy mum with an underactive thyroid - I’ve been permanently tired since I was 20! Nothing has got worse.

Ive always had a resting heart rate of about 90bpm. This has been put down to a diagnosis of anxiety.  

I need help.  I need advice. I need to talk to someone who knows what is going on. 

Ideally I need a phone call now to get my scans done and answers tomorrow!

thank you for taking the time to read my post. I’m worried sick and can’t stop crying. 

  • Offline

    Hello, 

    I’m sorry I haven’t been through similar but couldn’t read your post and not send a wee message. 
    I am presuming as you are a nurse you are reading between the lines of what is happening as as someone who is not medically trained I wouldn’t see the correlation between checking breasts and spine MRI and leukaemia. I have no idea what this link could be but the possibly benign is a real positive to hold on to over the festive period, I would really hope that your specialists would have an inkling and be more likely to write possibly malignant if the chances were higher with that.
    it actually sounds to me like they seem as confused as you are and want to test bloods and get lots of scans done.

    whilst not being helpful, I wouldn’t say they seem to be looking for leukemia or anything specific but actually that they don’t know.

    The waiting is the most awful part, I’m awaiting an MRI tomorrow for a mass found incidentally, I’ve had a very fast referral and nervous as anything. Also a mum, I’m 38 and sick to my stomach with nerves. Hate that I feel Xmas is just a pain where no medical staff are working this year.

    sending hugs, there is a a lot of us this horrible wait together, don’t think you are alone x 

  • Offline in reply to cloudy1986

    Hi,

    thank you for your reply, it has helped a little. I’m sorry you are going through similar. 

    I’m on edge. I’ve read every bit of information I can find relating to bone marrow issues. The breasts thing, it’s because of cancer has spread, it can leach in to your bone marrow. 

    I’m groping myself non stop now trying to work out if my boobs are normal or not!! I want to be able to just run into an all night clinic and pay to get them squashed to see if they’re ok!

    I keep thinking about the “possibly benign” thing and knowing that a screen was negative just a few months ago. 

    I’ve had bone pain for years - pelvis due to 2 full term babies. All the literature suggests leukaemia comes on fast. But then I worry that I’ve got a cancer somewhere, without symptoms and it’s gone so far it’s now in my bone marrow. 

    I’m a complete mess. I’ve had the worst 6 months with one thing or another and I thought, on Friday morning “right everything is sorted and under control, I can relax and enjoy Christmas” 40 minutes later I was getting that news. 

    How are you managing to cope with waiting? If you’ve got any good tips I’ll take them! I really hope you’re ok.  

    I'm one of the NHS workers that should be working over Christmas, but because of my back, I’m signed off. I feel horrendous guilt. 
     
    Please keep me posted with how you get on and if I can help you in anyway, just let me know. 

    sending you huge hugs back xx

  • Offline in reply to red-rose-steph

    How are you today? When do you expect to hear anything from the hospital? Is it scans you are now waiting for? 
    thanks for explaining I understand the link now. When I tried to learn a little more about it (I am interested as have my own spine issues after an accident) it seems to say there are 6 reasons for marrow changes, and yes you are right one of them is hematological issues, however this seems to be the least likely of all of the reasons. It does also say that injury and damage to the area can cause marrow changes, which I would like to hope would be your most likely bet considering you have actually had an accident and are still off work with the pain. 
    I really do think they are just being very thorough looking at everything and every option possibly. 
    My friend who is a doctor said a GP works best case scenario up to worst case and that hospital staff do the opposite. So perhaps your team are just doing that and ruling out the more sinister things first. 

    with regards to waiting - I can’t even take my own advice. We shouldn’t Google, we shouldn’t worry but we do. I make myself sick with worry, but I am a mum too and at least they keep our minds off things for even a short while! 

    for me I’ve been trying to walk, be out in nature and finding podcasts I’m really loving. It just passes the time. I’m not really enjoying too much just now in the waiting game, but I’ve accepted that just now is about passing the time.

    hope you get some answers soon, keep in touch x 

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