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MRI cancelled after I refused contrast

Hi All,

I recently had an appointment for some MRI’s but later refused due to not wanting to have contrast. As it had since gone quiet I decided to chase up the MRI department. The reply was that the Neurologist didn’t see any point and that the MRI’s were not longer required??

I’ve read about all sorts of side effects from nothing at all to headaches, rashes etc so understandably I am not keen to pump my already compromised immune system full of what is essentially a metallic compound.

Any thoughts?

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I assume your neuro’s reason for requesting the MRI was to assess how active the disease is currently? In that case, contrast is really the only way to distinguish between active and historic lesions, and so to get a snapshot of how active the disease is today. If that was his reason for wanting the information, he wouldn’t get it without the contrast, so that might be why he decided it’s not worth bothering.

On the subject of the risks of contrast, like you I’d read a few horror stories. But from what I can gather, severe side-effects are extremely rare. I don’t think I’ve ever read a post here from anyone who experienced a serious side-effect.

I was really nervous about mine, but other than the general unpleasantness of having intravenous anything, all I felt was a coldness at the injection site as the contrast actually went in.

The hospital (a private one) were not happy about me leaving the premises until I’d sat down for ten minutes and had a cup of tea - just in case of any delayed reaction - I felt absolutely fine, and was all for leaving ASAP, but reluctantly agreed to sit and have the tea, which I felt was over-cautious.

They do recommend you drink plenty afterwards, just to flush it through, so having tea made sure I’d got off to a good start, as well as giving them ten minutes extra observation time to make sure nothing was amiss.

I didn’t have a headache, or a site reaction, or anything.

Tina

P.S. MS does not mean you are “immuno-compromised”. A person with MS has as strong an immune system as the next person, and possibly stronger. It just seems to have skipped the part of the training that explained what is and is not a legitimate target. I.e. the bit that said: “CNS: friendly. Do NOT attack!”

Tina

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I’ve had no adverse reaction to the contrast injection either, but Tina’s right, if you have MS then they need to use the contrast for any MRI.

Your neurologist sounds much like mine, e.i. not one for explaining anything; he could have just told you why the contrast was needed.

Thanks Tina

He didn’t even mention contrast when he first mentioned doing new MRI’s. The first appt that came through was for Easter Sunday so that got cancelled anyway. It was only when I read the second letter properly I picked up on the contrast.

My other reluctance stems from a bodged blood test a few years back that has left me with a painful lump in my inside elbow. I’ll need to get it checked as they said it would go in time

I can see why that would make you reluctant, it wouldn’t be the same person injecting the contrast in radiology though. Do you have issues with your veins being illusive? I definitely do, the nurse who did my Tysabri infusions told me to keep sipping water throughout the hours prior to an infusion, and now I do the same before an MRI too, as I now know they’re always going to use the contrast.

It definitely helps to plump the veins up a bit, very often they successfully cannulated me on the first try if I’d managed to hydrate enough, instead of it taking 3 or 4 attempts.

It’s actually a doctor does it with MRI contrast - that scared me too, when I realised it has to be a doctor - obviously it’s deemed higher risk than a mere blood test, but you do get a more senior person in attendance.

My doctor was an Aussie with a very black sense of humour. He said: "Right, tell me if you feel an excruciating pain, OK? :wink: "

“Thanks, Doc - you’re a great comfort! Rest assured you’ll know.”

There wasn’t pain, of course - he was a total wind-up merchant.

Tina

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Ah, I just assumed it was the radiologist then? It was the guy who was sat in the next room watching the screen, not the lady who sorted me out with earplugs and so forth and got the machine going in the first place.

I was under the impression it had to be a doctor, legally, and that was one of the reasons it’s very much more expensive than a normal scan - not just the price of the contrast itself.

However, mine was on BUPA, so I don’t know if different rules apply to the NHS - perhaps because there would be emergency facilities on the premises anyway, in the event of anything going wrong. Or whether it is possible for scanner operators to take more advanced qualifications, to enable them to administer contrast.

However, with me, it was definitely not one of the regular team operating the scanner. He came in specifically to do the contrast, and I was told he was the doctor.

I’d assumed it could only be done by a doctor, as an invasive procedure with an admittedly small chance of a bad reaction seems to go beyond mere passive imaging. Not that I’m denigrating the work of radiologists - obviously there is technical skill involved, but I wouldn’t expect them to be personally responsible for injecting toxic agents, or to be the person in charge if it went wrong.

Maybe they can be, IF there is sufficient backup on site from suitably qualified personnel?

Tina

when ever I have had contrast MRIs its always been a nurse that has injected the stuff

Interesting! These 2 both couldn’t understand why it said on my sheet that I needed the contrast and they both dithered a bit. As apparently they don’t usually do contrast injections on a Saturday. This guy didn’t exactly behave like a doctor, didn’t have the aura, you know?

I wasn’t aware until my next infusion that MS people have to have the contrast each time, so I couldn’t help the poor confused MRI people at the time.

I don’t think it’s necessarily true that people with MS always have to have contrast, but it would make sense where the purpose is to check how active it is right now, rather than just count how many lesions since last time.

I’ve never been scanned since diagnosis - but don’t especially want or need to be. I assume that because I’m not on DMDs, we have no need to scan to check if they’re working - which is fine by me.

Prior to diagnosis, I had five or six MRIs (terrible to actually lose count!) - only one of them with contrast. So it’s not needed in all cases, it just depends exactly what they’re looking for.

Tina

The infusion nurse saying that about contrast is maybe just the same as her saying the window for Tysabri is 1 week after the 28 days but never earlier, while people in other areas have been told it can be a week earlier. Just different ways of doing things in different areas?

Unless…it’s always have the contrast when your MRI is specifically because you’re relapsing, so they want new lesions to be easily seen. Who knows!

I had no idea contrast injections had any risk attached at all. I’ve had MRIs with contrast several times (ie every time in the last few years) and at no time have I had any side effects, or any issues regarding it, like needing to hang around afterwards. I just assumed it was safe and useful.

Sue

The risks are very small - I think it’s possible to have a severe allergic reaction, but it’s extremely rare. The most common side effect is no more than a headache.

I did think the hospital were over cautious when they wouldn’t let me leave immediately, as I was feeling fine, but was more or less told: “No, sit down and have a cup of tea - you’re not going anywhere.” I guess they just didn’t want to be sued if I got ten minutes out the door and then collapsed!

Tina

Plus it’s no hardship to be forced to sit down and have a cuppa, is it :smiley:

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You dunno how much I hate hospitals, and how eager I was to be out and straight home. :wink:

Tina

x

I just assumed that it was safe and useful too, Sue, and that was (and remains) the extent of my curiosity on the matter. For me, one of the ways to stay sane with MS is being very selective about the things that one can be bothered worrying about.

Alison

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The veins in my hands are quite prominent, as is the vein in my inner right elbow. Still not having it though lol.

My line of thought is that it is my body and I decide what goes in it. If I drink too much and I feel bad, then that’s my choice and indeed my fault. I’m just cautious about doing anything or taking anything that may make me feel rough, having had a bit of a relapse / fatigue recently.