mri lesions and disease activity -- your experience?

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mri lesions and disease activity -- your experience?

Postby bluesky63 » Fri May 06, 2011 5:38 am

Good morning. :-) I would love to hear from anyone on your experiences with your MRIs and how your disease activity is or is not reflected on them.

Would you say it is an absolute given that disease activity will leave its mark on an MRI? I have heard conflicting ideas from different "experts," and I would like to hear from the trenches. :-)

This is very open-ended. I might try to find some actual research, but I am really interested in human input. Thanks.
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Postby jml945 » Fri May 06, 2011 11:29 am

I have classic MS symptoms, but no brain or spinal lesions.... zero. Which is part of the reason why I am still waiting for a diagnos.
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Postby sandrab » Fri May 06, 2011 6:16 pm

bluesky, I have had countless mri's. I have never studied them or asked questions about them. I always figured the dr knows what he is talking about. When first diagnosed in 2001 I had lesions on my brain, had a spinal tap and started on Copaxone. Later went to rebif. However MRIs done in 2009 showed I have progressed to Primary Progressive MS. I have a new Dr now and he said I have Primary Progressive Relapsing MS-now I can be treated, I have started on Tysabri. Maybe I'll see some improvment, I dream on. I have been med free since September 2010-since my last exerbation, I have improved a little, hence the Relapsing form of MS. Good Luck
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Postby munchkin » Sun May 08, 2011 7:26 am

Hi Bluesky

As a Canadian, I have only had 2 MRI's. The first for diagnosis in 2005 and the next to see if I was eligible for some kind of drug treatment in 2011.

Basically, my MRI has changed very little according to my neuro. But my disease has progressed slowly but surely in the last 6 years, this doesn't seem to be reflective on the MRI.

If my CCSVI treatment had lasted I would have loved to see what that would do to the MRI results.
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Postby Lyon » Sun May 08, 2011 9:37 am

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Last edited by Lyon on Tue Jun 21, 2011 3:24 pm, edited 1 time in total.
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Postby sou » Sun May 08, 2011 11:30 am

My MRI's were full of lesions, completely irrelevant to my disease progression. However, I can't but think the case of a close friend of mine. He has had many MRI scans from 1998 to 2006. They were all the same, as if they were photocopies.

In 1998, he could walk 2 km. In 2006 he could hardly move his legs. What could be a possible conclusion? What causes his symptoms if there are no new lesions?
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Filmmaker » Mon May 09, 2011 7:59 am

symptoms are from iron deposits on the brain that prevent the signal from communicating to the limbs... these deposits can sometimes not even be seen on MRIs... As for lesions, i kind of compare that to stomach ulcers... even when you have those you are still able to eat and digest, but if your stomach starts bleeding, then the real trouble starts... so i guess same with the brain....
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Postby sou » Mon May 09, 2011 8:43 am

We don't know for the time being. But all of our drugs are based on lesion count. I wouldn't mind having a zillion of lesions but be able to play football, as far as they arte invisible deep inside my brain, Perhaps, I would think differently if they were on the skin of my face.

Is there any point for my friend I wrote about above to take any count-the-dots drug? He's never had any new lesions, anyway.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Filmmaker » Mon May 09, 2011 2:14 pm

I also wonder if lesions are indicative of the amount of pain or not...
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