Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Anyone who had side effects from MRI with contrast/dye?

Discussion in 'General ME/CFS Discussion' started by Sebby, Mar 31, 2014.

  1. Sebby

    Sebby

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    I'm scheduled for an MRI with contrast/dye (Gadolinium based) and am wondering if any of you had any side effects? There is a debilitating disease called Nephrogenic Systemic Fibrosis (NSF) that happens after somebody with kidney disease has contrast. That's why I'm skeptical cuz I know CFS/ME messes with immune system and the immune system is also responsible for removal of dye (Gadolinium) from the body.
     
    Allyson likes this.
  2. Allyson

    Allyson *****

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    I had an MRI and had no issues with the dye at all

    It was noisy though so take your own earplugs and music

    Ally
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A friend with ME/CFS had side effects from the dye, but I don't know which dye she had.

    Sushi
     
  4. Raindrop

    Raindrop Senior Member

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    I believe I had the dye once and there were no issues. However, last time I had an MRI I was
    shaking like a LEAF when I got up and I had a horrifying sensation of being internally shaken inside
    the entire time. I guess my sensitivity to motion from ME/CFS made for this. It was disturbing.
    I hope you do NOt have that particular intense sensitivity. Best of luck!
     
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  5. Allyson

    Allyson *****

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    that

    that sounds awful Raindrop !- I felt nothing at all but the noise bothered me - was it a hot day when you had yours?


    Ally
     
  6. AndyPandy

    AndyPandy Making the most of it

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    I am fairly sensitive to medications, chemicals etc. I had an MRI with gadolinium and didn't notice any reaction. I was very ill with ME/CFS at the time, but the contrast/dye didn't seem to make me any worse. Best wishes.
     
  7. Hip

    Hip Senior Member

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    This study says that nephrogenic systemic fibrosis (NSF) occurs in 4 out of every 100,000 patients receiving gadolinium.

    This paper identifies the factors that increase the risk of getting NSF:
    So if you have several of the above, your risk increases.
     
    Last edited: Apr 1, 2014
  8. WillowJ

    WillowJ Senior Member

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    I can't have CT dye (iodine, much more common to cause problems), but I don't seem bothered by MRI dye.

    However, I react to the noise and vibrations and riding on the moving table like @Raindrop does. It makes me very disoriented, much worse vision, much worse balance, much worse cognition, much worse speech issues, and I feel trembly. They can see I'm having issues (if the place is any good) and don't let me walk out without someone right on my elbow.

    If I ask, I get premedication (they chose valium), which helps a little. But the noise sensitivity seemed worse than usual the next 2 days (although it was better the same day, after I got home, presumably from the valium).

    The hypersensitivity increase is any other crash to me, likely to wear off.
     
    Last edited: Apr 1, 2014
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  9. Raindrop

    Raindrop Senior Member

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    No, Ally, it was not a hot day. It's just that the machine DOES have a lot of movement. It bothered me
    a lot, lot more this year than in prior years. My hypersensitivity is probably worse and I did have
    some of the problems Willow described afterwards as well. Now I am fearful of having another MRI.
    It's always something with us, isn't it?:aghhh:
     
    Allyson likes this.
  10. Allyson

    Allyson *****

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    My MRI showed no movement at all - but the noise was a horrid

    There is now an Upright MRI n Melbourne Australia or anyone seeking one

    Cheers

    Ally
     
  11. WillowJ

    WillowJ Senior Member

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    that's cool. I couldn't find upright MRI near me.

    I would still go with MRI over CT scan because I can tolerate the dye. Plus it's not radiation.
     
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  12. Allyson

    Allyson *****

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    yes I think MRI s are quite safe - standing for long may be an issue ubt worth it to get results and they could re- hydrate you afterwards with IV fluids...that would prevent a crash



    Ally
     
  13. Allyson

    Allyson *****

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