I have to have a MRI scan of my brain, to help diagnose reason for unilateral tinnitus and bilateral rapid deterioration of hearing. It has been suggested that a contrast dye is to be used.
I have confirmed by skin biopsy 8 years ago UP / CM. Annual tryptase levels have for last 6 years been in 30s, gradually increasing from 14 previous 4 years. Also awaiting haematology appointment with possible bone marrow testing.
Main concern, should I consent to contrast dye for MRI?
Have never been prescribed epi pens, (managed with anti histamine, and anti leukatrine meds) but when I have an allergic reaction, usually quite mild, flushing, a bit wheezy, feel nauseous, itching. Don’t like the idea of that happening in the claustrophobc MRI, tube.
Any advice welcome, but particularly regarding the contrast dye.
Thanks.
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Topnumpty
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I had anaphylaxis and breakthrough anaphylaxis with pretreatment for iv iodine contrast. The allergist did a skin test and found out that I was allergic to a particular brand, but not to another brand. We’ll still follow the pretreatment plan, just in case.
That being said, I’ve had no reaction to the gadolinium used in an mri. But now the allergist and I have decided that it’s best if I at least do small pretreatment plan in case things change. I get anaphylaxis to meds that I’ve had no trouble with before.
Hi , I’m afraid I can’t offer any advice regarding the MRI but as a general point I find it interesting that everyone’s treatment differs depending on consultant particularly regarding Epi pens . Based on the Mastocytosis society patient leaflet I wonder whether you should have been prescribed these as I’m pretty sure their advice is that everyone with Mastocytosis should be prescribed these due to the risk of unexplained anaphylaxis. Anyway I hope someone else can offer advice regarding MRI and wish you lots of luck
Hi there - I'd make very sure they know of the risk, ask them if they can do it without contrast dye first, and only add that if they need to be sure of something, which may not be necessary, and above all: press the buzzer sooner rather than later!
(I usually enjoy the MRI like a rave, but last time pressing the buzzer cos of claustrophobia was only seconds away when they slid me out anyway. One of the two was with contrast dye, and I just got warm, nothing else. I'm not allergic to anything, but intolerant of 100s of things - meds, non-cotton textiles, water, most foods, some stress... My histamine-y reactions vary: nauseous sinus headaches, from food: a severely "burnt" tongue for a few days, but like you also generally nausea and itching, from meds often rashes everywhere).
As a registered nurse my advice would be to avoid contrast dye. You are high risk for an allergic reaction with potential anaphylaxis. You need to discuss in depth with a senior member of the radiology team your medical history and concerns, and see what they advise. They have more than one type of dye and I don't know if there is any way of determining which would be best. Follow your gut instinct which is right, proceed with caution.
Thank you all for reading my post, and for your responses.
Merma , @ehat , my allergy consulants have not been helpful, at all, and when I asked the current one about contrast dye she just shrugged and said to leave it up to the clinician carrying out the scan!
poshpen , I am aware of our Mastocytosis society advice regarding epipens, even had the demo with a dummy pen at conference, and spoke to GP and both allergy and haematology consultants about it. They say I don’t need them and, thankfully, to date I haven’t. I can’t persuade / force them to prescribe the pens for me.
JayCeon , I have had MRI scans before, though without the dyes. I am quite sanguine about them. (That is after the first which scared the life out of me as it hadn’t been explained that I would be inside a tube, totally dependent on the operator to get me out). I hate not being in control. I like the idea of treating it like being at a rave, except for the need to keep absolutely still. 🙂
janeps , I think you have endorsed what I was thinking. Not to just blindly trust the clinicians have an understanding of mast cell disorders. Experience shows they do not. Will stand my ground , be bold and question everything. Not often a popular stance, but we are, after all our best ‘experts’ on how our bodies react to various stimuli.
Many thanks , all, for your supportive responses. Much appreciated.
Whaa, so true, about rave but being still! But thinking about it, I think that's just another mind game. I can't dance non-stop for an hour like 10 years ago anyway, at most 5' light dancing movement. So it's more like a fond memory, and imagining all the movement going on in the room. Also you've reminded me that I usually cycle 20' to the MRI, partly uphill, so have moved too much before and really need a rest, so feel like sleeping rather than moving, so it's more a rave in the trance area... - and actually I do try to and do get in a trancey state (NSDR helps that too). That also explains why last time I got claustrophobic towards the end: I was in hospital already, didn't cycle there. So I'll watch for some kind of activity before it next time.
Good to hear! Timely, your update... Got a contrast CT coming up tomorrow, my onco suggests to make sure there's nothing dangerous in my torso. And it should only be something small, that isn't visible on an ultrasound - so either I do it with contrast or leave it. I don't get anaphylaxis, but what might happen is it takes all my energy for a week or month, unlikely more. But hopefully my LDN will save me from too much of that - it's the only thing that manages to get and keep my energy up (only if I take it).
Edited "tomorrow" (4h after oral contrast and 3h after injected contrast): OK so far. *phew*
Since then I've kept my energy from LDN, but pain all over and nausea once I start moving from the day after on (such late reactions are typical for me).
Then on the fourth day after I got severe vertigo before getting up and spewed violently for 3 hours after, so additionally recovering from that.
My wife isn't sure if it isn't a bug, but I wouldn't know what from and I got severe vertigo like that after a painful exam in August too, there with high blood pressure, this time normal.... So in August they had to do loads of tests for stroke etc., but didn't find anything. Did a contrast CT then, too, but I probably couldn't tell if it made me feel worse, as first the vertigo, then hospital was a big problem. More contrast dye now 5 months later will have been too much of a burden, that's what I read.
Someone suggested her protocol of an antihistamine, immune-suppressant and antacid, but I'm pretty sure I'd have quite a few problems from those, and they'd I think be more for short term than for long term problems...
The CT is quick, no noises, just a ring, not tube, so not really a chance of claustrophobia. I had both oral contrast dye for my gut and intravenous for my lungs, but my doc didn't let on what was in it, just it wasn't radioactive like I'd thought. He thinks it's an excipient rather than the dye. In August it was only intravenous, so maybe it was the oral one.
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