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-   -   Can you help me get my head around a good MRI?. (https://www.neurotalk.org/multiple-sclerosis/176270-help-head-mri.html)

offinthedistance 09-11-2012 03:25 AM

Can you help me get my head around a good MRI?.
 
I had my MRI this morning after two year on Copaxone. It was my Tysabri-starting baseline scan.
Happy to report that there was 'no radiological deterioration despite worsening symptoms'.
Over the moon with it to be honest. So the copaxone was working after all. (?)

What I can't get to grips with is my worsening symptoms with nothing to show for it as it were. I feel a bit stupid. Am I making it up? Am I being a hard-up princess? should i just toughen up? There's nothing new wrong with me!!!!!!
Get a GRIP woman!!!

Any ideas of how to understand my quality of life deterioration without brain deterioration?
Does this make sense? Do you know what I'm asking?

Snoopy 09-11-2012 11:12 AM

Hi offinthedistance,

Unfortunately, progression and/or an increase in symptoms can happen even when MRIs are stable or improved.

Many find the MRI does not match up with how they feel, such as; a person's symptoms are worse or they are having a relapse but the MRI shows no changes or the person feels fine but the MRI shows active lesions. Sometimes the MRI will match up to how a person may feel.

Bottom line: There is more to this disease than what an MRI show. It is always better to treat the patient, not the MRI.

NurseNancy 09-11-2012 01:56 PM

snoopy had great advice, and wisdom.
i don't think you're stupid, or making things up.
you know your body the best so trust in that.

it might help to keep a symptom journal with sx's and dates.

what does your neuro say?

offinthedistance 09-11-2012 05:52 PM

Thank you both. I know what you told me, I just needed someone to tell me.
I don't have anyone to talk to unfortunately.
No neuro appt until 3 months and he's not much use at the best of times anyway. He will probably tell me I was being stupid.

KittyLady 09-11-2012 07:42 PM

I just went thru a flare from hell in October. My MRI didnt see any new activity, but my body said otherwise. I couldnt walk, kept falling, blurry vision, etc etc. All my probs have landed in my legs and yet I have no lesions on the spine according to the MRI. My neuro said to ignore that. He said just because they didnt light up on the MRI, doesnt mean they are not there.
Are you seeing a MS specialist or a regular neuro? Sometimes, that can make a world of difference.

Catch 09-13-2012 11:43 AM

I only have a couple of lesions in my brain, nothing in the spine. I have hand, foot and head pain that show no correlation to the lesions. I've been on Copaxone 6 years and no changes in my MRIs, though my hand and head sx continue to increase in frequency and severity.

daisy.girl 09-14-2012 01:18 PM

I saw my neuro this week, and we discussed MRI's. He explained to me, that the software of the machine and the correct settings for MS are the most important.
His experience has been that even MRI at .3 or .6 Tesla can be better then 3T, if the software is better and the quality of the actual machine. He named them, but I can not recall now. But he said a certain .3 T machine has much better quality then a 1.5 T other brand machine.
Can this get any more confusion for us?

tkrik 09-14-2012 02:51 PM

MRI's are done in slices. The older machines do 1/4" slices. It is very easy to miss a lesion in the 1/4". Additionally, spinal MRI's are difficult because the spinal column is so narrow and packed with lots of other things. It is very easy to miss a lesion in that area, especially if it is not an active lesion.

Snoopy put it in words very well.


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