This is the latest in a number of q’s I’ve posted over the last 4 months since my symptoms began to feel like a pattern. My status is ‘sensory and motor symptoms - cause uncertain’ but post viral CNS inflammation and MS have been put forward as the two front runners by the consultant and GP agrees with this.
I had my head & neck MRI this week following a 5 week wait. I wasn’t sure whether to expect contrast as it was mentioned at my examination but not in the MRI referral letter. I was told by the radiographer that it might be given half way through but after 35 mins I was done and was told the radiologist had deemed it not needed; he/she had looked at some of the images and they were ‘clear enough’.
I know the sensible thing to do here is to not speculate and be patient but I can’t help but wonder if that’s a good sign. My partner said the same - if there was anything showing up they’d surely want the contrast to look closer? My symptoms are very active right now though and have been up and down for a while.
Any advice or thoughts very much welcomed - the waiting is becoming unbearable as the weeks go on and I’m finding it hard not to Google the same things on a loop
Hi. I didn’t have contrast at my MRI but they did use one of the more powerful 3T scanners. I too am waiting for MRI results of my head and spine. After 2 hours I don’t want to see another mri machine ever again.
I think they can see lesions without contrast, but the contrast picks up which ones are active as the gandolium leaks through the blood brain barrier. That’s my understanding anyway. Hopefully someone will correct me if I’m wrong.
I have not googled. I clean skirting boards instead. Or clean anything as a distraction. Set myself projects and to do lists to keep busy. The waiting is hard but for me it’s healthier to stay away from the internet. I just check in here briefly twice a day and try to forget it all the rest of the time even if symptoms are horrible
I was told 2 weeks for a mri result. Some people have waited much longer. Ian’s stress makes everything worse.
ive sorted socks, folded towels like in the shops. All sorts. Just to keep busy. It helps a lot. Maybe it will work for you
Hi oakdoor, thanks for your reply. I totally empathise with you - it’s so hard to divert the worries that creep in. I was told 2 weeks max also, that’s reassuring we’re getting similar advice. I was keeping busy and actually starting to feel things were ‘lifting’ - I was all set to go back to work … until I somehow picked up a cold (despite being careful) and it seemed to set things off again with a vengeance. I feel too crap to do much other than nap and potter about and it’s not doing me any good not being occupied. I miss my work and my colleagues but my brain is operating on 50% on a good day so I’m accepting I need to be away from it for now.
It was a T3 scanner today I think, I checked out of curiosity. And what you say about why contrast is used makes total sense, but you read different things online - I know I need to take a break from that!
I hope you get some good news soon or at least news that helps understand what is going on and gives you some choices about what next. Without wishing to sound glib about a condition I haven’t been diagnosed with, I’ve become so used to feeling this way that my worst fear is not MS but instead, limbo dragging on indefinitely. I have felt at times that maybe I’d crack up from the pain and the buzzing/jabbing/needling feelings - that’s the aspect I find hard.
i have found this forum so helpful - it’s helped me cope i think.
An MRI without contrast won’t pick up active (very recent) lesions. Radiologists do seem to be a bit of a law unto themselves as to when they decide to use contrast or not. There is certainly a move by radiologists to not use contrast if it isn’t necessary, as some of it remains for ever in the brain. Neurologists, however, often just routinely ask for it.
My neurologist asked for with contrast. The radiologist decided to not use contrast. It did turn out I had some lesions, but of course we don’t know if any of them were active.
Two weeks seems to be the usual time given for the radiologist to produce the report. It depends who they then forward it onto, (i.e. the person who requested the scan) as to how long it then takes before you get told the result. Some neurologists seem to have very full in trays and take a long time to get round to doing it. But at the 2 week period that is when it makes sense to start chasing up the person who ordered the MRI for results.
Thanks Ziola. That makes sense. I am always accepting of the opinion of the medical professional but I hate being left in the dark as to why things are done/not done. I’m not pushy enough to question things in the moment then I drive myself mad questioning afterwards. I can’t draw any conclusions from the decision then, as I suspected but I guess I was trying to look for positives. I really appreciate your advice and I hope you’re doing well right now.
I’m awaiting an appointment for my 5th MRI scan (the second one of my neck!), so be aware that you may need further MRI scans before you get a diagnosis. So far I’ve had head, neck, lumbar spine, and thoracic spine MRI scans. All on seperate days, with months between scans…
That sounds horribly stressful. The waiting is the absolute worst. I was so relieved the MRI was finally here, I almost threw myself into the machine!! Hope things start to move a bit quicker for you green giant - sending my best.
Interesting discussion. My recent MRI was done with contrast injected halfway through. So i had scans with and without the contrast. Neither picked up lesions. I’m wondering though - how recently can an MRI (3T btw) with contrast pick up lesions? My symptoms have been going on for about 2 1/2 months - would an MRI with contrast likely pick up lesions after that long? Apparently no active inflammation or any demylination was seen yet i have been symptomatic for over 2 months.
This confuses me too! I have had loads of new stuff going on since January but MRI done in March is stable. My MS nurse said that it’ll just be old lesions ‘playing up’ and causing more havoc with interrupted messages.
Yet they tell you in all the handouts from Neurology that any new symptoms of more than 24 hours or old symptoms flaring up are relapses?
So I asked her if that means I am secondary progressive now - and she said “Oh no you won’t be that, you’re still RRMS”
But my symptoms since 2018 haven’t remitted and I have more… so mucho confused.
I would have expected a 3T to be fairly sensitive but take on board your point that by the tie we get the MRI, has the lesion gone quiet again if it’s an old one - or is it in a sneaky place and hiding!!
Hi Minnie Mouse, thanks v much. That’s good to know. Three weeks isn’t bad at all. I’ve calmed down a bit now. I think the uncertainty of it all got on top of me last week & I was struggling with knowing the results are sitting somewhere, but out of my reach. This week I’m back to feeling more hopeful but a bit less fixated too. I feel a bit daft for getting so worked up when nothing has been confirmed, far from it. I read your point below too regarding contrast and what is ‘new’ versus what is ongoing - it’s mind boggling how complex it all is. But good to hear you haven’t had a relapse in a while. Hope you’re doing ok in these very testing times. I’m grateful to everyone on here who is actually living with the illness who takes the time to respond to people like myself who aren’t necessarily but have those question marks hanging over them… so thanks once again!
Hi Jaytee. There are some old threads on here where other posters have discussed this, I think I read something (perhaps here but perhaps elsewhere) that for symptoms going on longer than a couple of months the contrast is not as useful/relevant. I searched ‘contrast’ to find these other threads. I could be way off the mark with that but maybe worth having a look at these more detailed threads?
I can’t draw any conclusions from the decision then, as I suspected but I guess I was trying to look for positives. I really appreciate your advice and I hope you’re doing well right now.