Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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MRI with contrast

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Snookum96, Aug 1, 2015.

  1. Snookum96

    Snookum96 Senior Member

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    Yesterday I went to the US and had two MRI's done. Brain, with contrast, and cervical spine.

    After cervical spine and the first brain scan they did the contrast.

    First of all, I thought I peed my pants. I didn't but it sure felt like it. I have since read that this is not an abnormal feeling for people getting contrast for scans.

    However, my tongue also got really hot and felt like it was swelling up. I thought I was having some weird kind of allergic reaction and my tongue would block my airway. Nothing happened of course.

    I almost freaked out but we were almost done (the whole thing took 2 hours). I knew it was going to cause major PEM (which hasn't kicked in yet luckily), so I wanted to make sure it all got done and I didn't have to do it over again.

    Anyone have this happen before with an MRI?
     
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  2. minkeygirl

    minkeygirl But I Look So Good.

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    I've had contrast before I got ME and yes it makes you feel like you're going to pee yourself. That's normal.

    As for the other stuff, no but if it's passed then nothing to worry about. Except PEM of course.
     
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  3. PNR2008

    PNR2008 Senior Member

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    I had the same, brain and spine with and without contrast and I felt tired but not allergic which was great because I developed a reaction to the oil-based dye previously in a mylogram. I never felt the urge to urinate with the MRI thankfully. Take care.
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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    3 MRIs with contrast since having ME, no PEM afterwards.
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    Why in humanity's name could they not have at least given you a heads up as to how you might respond to the contrast agent?
    You know, just a few words as they're preping you. Some people feel . . . How hard can that be?

    I have never had this done but I hope you get some useful knowledge from having gone through this.
    What is it they are looking for?
     
  6. Snookum96

    Snookum96 Senior Member

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    As they were putting the IV in the tech was telling me that there are no side effects to the dye.

    She also didn't put the line in right the first time and had to do it again, now both arms look brutal.

    Doc wanted to see pituitary and re-do the brain MRI I had last year on a better machine (3 Tesla instead of 1.5).
    My last MRI was abnormal but all the neurologist said was basically "you don't have MS". My new doctor wants to see a clearer picture of those abnormalities. He

    is testing everything to try to see if some of my symptoms are caused by treatable conditions. All my other docs just kind of wrote me off and told me to exercise and eat right so it's very refreshing.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm glad for you that at least you have a Dr willing to investigate.
    I'm so clueless, I did have a regular MRI a few years ago and it was normal but I had no idea that not all MRI's are created equal or until recently that these things were so dependent on interpretation.
     
  8. Snookum96

    Snookum96 Senior Member

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    @Snowdrop
    I didn't know that either. The wait for a Tesla 3 MRI was 6 months for head and 9 months for neck. There are only 3 hospitals in the GTA that have that machine apparently.

    Yes this doctor believes strongly that ME and CFS are two different things and he uses brain mapping and stuff I don't really understand all of it but I don't care at least I'm getting tests done!
     
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  9. Thinktank

    Thinktank Senior Member

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    I've been planning to do a new brain MRI with contrast fluid but recent findings about the possibility of gadolinium lingering in the body has held me off doing the scan.
    Have any of you experienced an increase in brain fog or other cognitive dysfunction after a MRI with contrast fluid?
    My hospital carries a siemens tesla 3 scanner with a wait of only 2 days...
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    That's what they wanted to do with me. After my first MRI they wanted a close-up of my putuitary, where they found a 7mm cyst. You can imagine after that I went home, started googling and terrified myself. Turns out it's nothing to worry about, it isn't changing, I've probably had it for years (as have many other people), and I had all my hormones checked by an endocrinologist which are normal, so the cyst isn't causing any harm. Point is, if they sit you down afterwards and say "we've found something" and use the term "growth" or "cyst", don't panic, it may well be completely harmless and nothing to worry about. Don't go home and google yourself into a bit of a state like I did.

    To be honest I was relieved when I thought they'd found a "brain tumor", at the time I wanted it to be that rather than ME, then I'd have had a diagnoses, a course of treatment, and an end in sight.
     
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    Haven't noticed any negative effects following 3 MRIs with contrast fluid over the course of about a year.
     
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  12. JAH

    JAH Senior Member

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    I had a 11/2 hour cervical spine MRI with contrast. After I got the contrast I had burning in the back of my head and a severe headache. The pain was truly severe. I almost had to have them pull me out. As soon as they took me out of the machine, I was basically fine. That was a rough one....

    I've heard of the urge to pee more with CT scans.
     
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  13. Mels

    Mels

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    I had an MRI of my abdomen recently and thought I had wet myself , too. Felt very hot throughout my body, and my mouth felt as if it was swelling but it wasn't. I had 2 heart MRIs a few years ago and had been warned about the feeling of heat everywhere but wasn't told that this time- different hospital. I recalled it as I was lying there thinking I had wet myself. This time my mouth felt very much as I imagine a serious allergic reaction does and I was about to call out but it passed. Wonder if my response has become stronger as I have become more sensitive to medications.

    Mels
     
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  14. jimells

    jimells Senior Member

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    Over-reading Xrays and MRIs seems to be an occupational hazard for radiologists. Based only on an X-ray, a radiologist "diagnosed" me with COPD even though I have zero breathing problems and at the time I was still playing baritone saxophone nearly every day. A baritone sax takes a lot of air, not as much as a tuba or trombone, but lots more than just regular breathing and talking, for sure.

    I also had a cervical MRI at about the same time. The neuro ordered it with contrast and without. I declined the contrast dye, and it didn't make any difference - the radiologist still found a slight stenosis from a bulging disk. The neuro said it was more over-reading, not to worry about it. A physical therapist who carefully examined my neck concluded that I had a 55 year old neck - my age at the time.

    Of course, the neuro also said the bright spots on the brain MRI don't mean anything, even though it is a common finding among ME patients.

    The scariest part about all this was the willingness of the family practitioner to send me on a 250 mile round trip to have steroids injected into the disk, even though the only neck pain I have is during migraine attacks. I might be dead if I had consented to this procedure, since not long after there was a huge scandal about contamination at the compounding pharmacy in Massachusetts that was making the stuff. At least 28 people died from fungal meningitis.

    http://www.webmd.com/pain-management/news/20121101/fda-2-more-necc-drugs-contaminated
     
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    @jimells
    I'm liking your post for the baritone sax. The rest, while all too common is too scary to really 'like'.
    Good call on the steroids.
     
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  16. Snookum96

    Snookum96 Senior Member

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    So I got my results back...


    Only brain finding was (this was found on the cervical spine MRI but I believe pons is part of the brain.)

    Bright signal intensity foci in the pons likely due to demyelinating disorder.

    This is the cervical spine stuff. I don't understand most of it. The brain part was what I was really interested in.

    C4-5: Slight disc space narrowing with minimal posterior bulge and minimal far left posterior ridging with slight hypertrophy of left uncovertebral joint without significant stenosis.

    C5-6: Minimal spondylosis with left posterior ridging and protrusion (osteophyte disc complex) extending approximately 2.5 mm into the spinal canal partially effacing the anterior subarachnoid space and mildly encroaching on the left lateral recess and the left neural foramen.

    C6-7: Broad-based central herniation of the protrusion type extends approximately 2 mm into the spinal canal partially effacing the anterior subarachnoid space without impingement on the spinal cord.



    Does anyone know if the brain findings are common? I understand it can be caused by viruses but I thought I'd been tested for the major ones.
     
    Last edited: Aug 4, 2015
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  17. Misfit Toy

    Misfit Toy Senior Member

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    I can't answer your question. I wish I could. I just had a brain MRI/MRA done today. I love MRI's-they put me to sleep...the hammering sound lulls me. :)

    Okay, are you having major neck pain because from what I am reading you would be? Your spinal canal has been effected. Pain?

    C5-C6 is my problem. Spinal canal is intact but I had 3 months of PT for it..it's much better, but let me tell you, it hurt and I don't even have what you have going on.

    I truly hope someone can answer your question. Your doctor will hopefully enlighten you, too.
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    No. My rheumatologist was totally against me having the contrast. I am glad he said that and agreed to me not having it because I couldn't deal with one more symptom...but yes, he said.."it can make you sick."
     
  19. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I am doing physical therapy for problems in my lumbar spine right now. I am wondering if it would be good for you to do PT before things got bad enough to cause pain. Is there any way you could have a physical therapist look at that report?
     
  20. justy

    justy Donate Advocate Demonstrate

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    I wouldn't have a contrast dye as its contraindicated for people with MCAS - which some of us with M.E/Lyme also have.
     
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