I’ve just been aware that 2 users who received Gadolinium MRI contrast developed a Syndrome called:
“Gadolinium deposition disease”
That is as bad as PFS.
Now they are suffering both: PFS + Gadolinium disease. And are on precarious state.
Please, try to avoid contrast while getting PFS to be sure you don’t worsen your situation.
Thanks for the information.
I have an MRI appointment in a few days for my head.
I’m not sure if a contrast medium is needed there.
If so, what should I do? I don’t want to cancel the MTR.
Are there further experiences with the contrast agent?
What do you think about that?
Many Thanks
There are few users that told me that everything was fine.
But having two with that disease on our community i would not take the risk if i could.
You can demand no contrast in most cases. Just say you are allergic and they will adapt to you.
Why you have an MRI?
If they’re going to make a scan of your brain then yes you will most likely need to use contrast dye in the MRI otherwise the doctors simply will not be able to see what is going on. It’s usually only when they are looking for big and obviously shaped things that they might not need the contrast dye.
Generally speaking, before an MRI the doctors usually ask you to do a blood test, they use this among other things to see if you have any kidney problems and might be at risk for complications from the contrast dye, because that usually only happens to people whose kidneys are unable to process the dye quickly enough.
I had an MRI done of my brain two years ago and I had no problems with the dye. Most people don’t. It’s obviously worth reading up on the risks and maybe you feel better if you call the doctor and ask which contrast dye they’re going to use in your case and have some ability to read up on it.
To be honest with you, I think you don’t need to worry about it, but caution is never bad and it’s probably a good idea to have an informed discussion with your doctor about it and to confirm with them if they properly assessed whether it’s safe for them to administer the contrast dye to you.
It increases the risks but far from everyone who gets it have impaired kidney function. I read about it after I saw this thread and apparently the dye stays in everyone but in some individuals the immune system go haywire.
8/9 in that study had more than one go with the dye, but 1 of them still got it on the first try with perfectly healthy kidneys.
I’m not saying you should never have an MRI with contrast, but it would be wise to weigh the risk/rewards prior.
Thanks for the advice.
I have an MRI appointment because I suddenly had blurred vision in one eye for several hours and felt dizzy. Since I think that PFS may have caused kidney problems for me and people who have PFS have developed this disease, I will probably not take the risk and do an MRI without contrast media. If it doesn’t work without gadolinium contrast agent, I’m thinking about doing a computed tomography. There, iodine-containing solutions are used as a contrast agent.
I already have strong brain fog, a worsening from the contrast agent would be catastrophic for me.
With respect to everyone in this topic, if you need an MRI, talk your concerns through with your doctor first before making a firm decision. These tests are not ordered (I assume) flippantly, after all.
How are doctors supposed to know if contrast will harm a PFS patient?
@Wintermoon @Greek no doctor is going to advice @alex94 as Gadolinium disease is as neglected as PFS.
Let me repeat again:
THERE ARE 2 PEOPLE AFFECTED WITH PFS THAT PRESENT GADOLINIUM DAMAGE.
we can’t ignore that, and to me is very significant that in the studies some patients have autoimmune disease.