MRI/reaction

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MRI/reaction

Postby ljm » Wed Oct 04, 2006 11:53 am

Yesterday I had an MRI w&w/o gladolinium. I continued on to work afterwards but my arms and legs felt a little numb, and they feel somewhat worse this morning as if I've had a relapse. Granting that MRI's are next to worthless since lesions have nothing to do with either disease status or progression is it possible they're also harmful? I couldn't find any google on this at all, has anyone else felt crappy after an MRI?
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Postby Loobie » Wed Oct 04, 2006 5:05 pm

I actually feel the opposite after an MRI. I think it is me imagining that the magnetic field somehow puts stuff in order. Either that or the fact that I sleep in them and never get a chance to take naps during the day. I always have a crap taste in my mouth from the contrast though, but no physical alteration.
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Postby ljm » Wed Oct 04, 2006 6:06 pm

Thanks for response. I don't know why my arms/legs feel so wierld. Maybe it was the stress of being strapped down and injected. Anyhow I just got the radiologists report and meaningless as it is, it is meaningless in a benign way. I told the lab I wanted to make sure the report got to my primary doctor (general practitioner), and then I gave them a fax number which is, in fact, my own. I think in the US this sort of falls into that gray area called "pre texting", and maybe also falls into that beige area of "why didn't you just ask for a copy up front" but, at any rate, there is nothing enhancing and the cervical spine is completely clear (whereas I had a large C1 lesion before). I realize this is useless information and my neuro will press me to onto a crab anyhow when I see him in a couple of weeks.
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Postby mrhodes40 » Thu Oct 05, 2006 3:59 pm

Hey a disappearing lesion is very good no matter what. :D Even though they seem to be less related to disease progression than we'd like it's still true that normal people have little to no enhancement on mri, so a lesion that is not there is good news.

I also get this tingle thing after MRI's.
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Postby ljm » Thu Oct 05, 2006 4:32 pm

Yes, I agree that disappearing is better than appearing, its just, I find it more and more incredible that we are sent through this diagnostic process that...apparently...has little or nothing to do with the disease process. I should have just refused to do it, I think MRIs in MS are pretty much a research sham. I can't believe there are not more effective disease markers.
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Postby amelia » Fri Oct 06, 2006 6:48 am

AS bad as a disease "watcher" the MRI and lesions are, DRs are still using it. I know some of you have dropped Neuros. To each his own, but I will give you a bit of info to think about. Gary dropped his Neuro early in his MS, before definite diagnosis. He went 8 years in remission and then one day....... the bottom fell out. No regular DR around our town would touch him and then previous Neuros would not see him for weeks because he wasn't even in their filing system anymore. Needless to say, he did not have weeks. He hardly had hours. We wound up in the emergency room where we knew he would be instantly referred to a Neuro. All of this would have been different with a diagnosis. and hopefully if you don't have a Neuro, your DR will treat you with steroids, if needed. Just a little food for thought. The system isn't all right the way it works, but it is all we have to work with, right now.
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Postby ljm » Fri Oct 06, 2006 9:19 am

Those are good points, its a pretty sobering story, I'm not dropping neuros, but I think I should be able to say that I don't want to be subjected to a test that is not very useful. We need to participate in the direction that research/treatment takes, and I can't see that I was helping that direction by signing the release for an MRI instead of at least asking "hey, you folks have any plans to start measuring N-acetyl aspartate or anything actually suggestive of a correlation with physical or cognitivie disfunction?"
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Postby amelia » Fri Oct 06, 2006 10:09 am

I agree that the MRI process is virtually useless. But most Neuros will still want to "gauge" your disease. They think they are "doing" us some good. We know better. One day maybe they will. Gary's Neuro has not been pushy about the MRI's until he has decided to get on Tysabri. Alot of that is requirements for the TOUCH program. :roll:
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Postby ljm » Fri Oct 06, 2006 12:59 pm

Yeah, that would be consistent. The TOUCH program would insist on MRIs because its an indicator that they are pretty confident the drug will have an impact on within short term study period. Sometimes I wake up thinking this is all a bad sci fi movie. Like that Florida post, this uber chic event for a MS research fund headed by a guy who has NEVER HAD ANY PUBLISHED RESEARCH AS EITHER PRIMARY OR EVEN SECONDARY INVESTIGATOR ON MS OR ON ANYTHING. Is it too freakin insane to ask WTF they're planning to do with $250,000 they hope to raise from everyone comin out and joining local celebrities on a SPIN FOR THE CAUSE challenge? It made me feel sick(er).
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Postby amelia » Fri Oct 06, 2006 1:11 pm

For all the people who deal with the decisions of MS, like FDA, DRs, Drug Companies, but don't have MS or deal with a loved one with MS........
Well, I can't say what I would like to, but I wish they would have to really deal with :twisted: Yeah sometimes I wish they even had it....
I believe their "decisions" and concern would be different. :!:
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