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#1 | ||
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Junior Member
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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? |
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"Thanks for this!" says: |
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#2 | |||
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Magnate
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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.
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Dx RRMS 1984 |
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"Thanks for this!" says: | Blessings2You (09-11-2012), Catch (09-13-2012), hollym (09-14-2012), jprinz99 (09-12-2012), KittyLady (09-11-2012), offinthedistance (09-11-2012), SallyC (09-11-2012), tkrik (09-14-2012) |
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#3 | |||
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Grand Magnate
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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?
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Judy trying to be New Skinny Butt ______________________ You are a child of the universe, no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. -------------------------------------- "DESIDERATA" by Max Ehrmann |
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"Thanks for this!" says: | offinthedistance (09-11-2012) |
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#4 | ||
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Junior Member
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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. |
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#5 | |||
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Member
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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.
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Dx RRMS April 1992 Yearly flares from 92 to 11 MS induced seizures 2002 Flare Oct 2011 Flare Dec 2011 Left disabled after 2 previous flares Betaseron '02, Copaxone '12, Tecfidera '13 (allergic reaction to all) No longer taking any MS therapy meds |
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"Thanks for this!" says: | offinthedistance (09-15-2012) |
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#6 | ||
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Member
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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.
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Relax--It only hurts until you die . I'm still walking upright and six feet above ground. . |
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"Thanks for this!" says: | offinthedistance (09-15-2012) |
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