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not thrilled with my latest MRI / what to do now?
Not thrilled with my latest MRI results.
Last one was done in June 2012. At that time, re: brain, report noted nothing remarkable in brain, including brain stem which had a visible lesion since dx in 2007. Re: spine, previously identified lesion at C4 was again see, as was one at C6.
Fast forward to last Saturday, and this is what was seen.
".....a few small lesions within deep white matter of the left parietal, left frontal ad right temporal lobes.....additional smal lesions are seen in the left anterior pons, right middle cerebellar peduncle and ventral pontomedullary junction......multiple cord lesions......small lesion ventrally with minimal volume loss, larger lesion dorsally, extending from upper C3 to mid C4 shows moderate volume loss.....additional smaller lesions in right lateral cord at C5 and in right dorsal cord at C6. No evidence of active enhancing lesion."
Unfortunately, no comparison to the previous MRI was done as this was my first vist to this facility in a new city.
When I compare reports, there are six new areas in brain and three new areas in C spine involved. Its possiblei guess that the one in the pons is the old one perhaps missed the last time. but everything else is definitely new. No idea if each of these areas has one lesion or if there are more, since the report doesn't clarify number or size of lesions.
Clinically I have done reasonably well on Copaxone since initiating tx in June 2008. Three relapse since then.
Dec 2008 - ON, tx IVSM, resolved fully within several days of onset.. (Doc said might have been too early for Copaxone to be having full effect, though on the other hand the brevity and full resolution of this episode might be partly attributed to the med.)
July 2011 - moderate relapse mainly sensory symptoms, most resolved over time after IVSM, hand/forearm symptoms were already there and remained after relapse ended.
July 2013 - very mild sensory relapse involving right arm, back. Felt like sunburn. Fully resolved within weeks, no IVSM.
I believe Copaxone has met my expectations clinically; it reduced my relapse rate by more than 1/3, and severity of relapses has reduced dramatically.
I don't really know about meeting expectations MRI-wise. This latest one is worse than I'd hoped for. I would describe myself as stable clinically, and thought that MRI would reflect that.
I think the only lingering remarkable symptom would be the odd sensation in my left leg. It's happened intermittently for about for years. Used to feel like an odd sudden shock while walking or even sometimes while sitting. A paroxysmal symptom I believe it was termed. It's now more of a sudden sense of weakness, no longer a jolt. When active (eg treadmill) it happens about every 10-15 steps. At the same time, I feel like my gait is a bit off, like my right foot is kind of slapping down awkwardly instead of a normal step. I've asked others to observe me and to their untrained eyes apparently what feels clumsy appears totally normal.
OK so I guess I contradicted myself about being clinically stable. But other than the leg, everything else has remained the same. Still have uncomfortable paresthesias, fatigue, mild double vision and dizziness when fatigued, Lhermitte's and Uthoff's. No better, no worse than in 2011 = stable.
Actions I think I need to take:
Provide radiologist with last MRI and ask him to amend report with a comparison. Ask him to be specific re: size and number of lesions.
Advise neuro of the evolution of my leg symptoms, and discuss the possibility / necessity of changing treatment.
Sorry this is long; I wanted to be thorough as I'm really hoping to get your thpughts and opinions / what think you would do if you were in my position.
Thanks!
ps: as mentioned, current and previous MRIs were done on different machines at different facilities interpreted by different radiologists, but both were done on 1.5T machines. I considered that perhaps the new radiologist picked up on some things possibly missed previously, but I think it's too much to hope for to believe that alone would account for such different findings.
Last one was done in June 2012. At that time, re: brain, report noted nothing remarkable in brain, including brain stem which had a visible lesion since dx in 2007. Re: spine, previously identified lesion at C4 was again see, as was one at C6.
Fast forward to last Saturday, and this is what was seen.
".....a few small lesions within deep white matter of the left parietal, left frontal ad right temporal lobes.....additional smal lesions are seen in the left anterior pons, right middle cerebellar peduncle and ventral pontomedullary junction......multiple cord lesions......small lesion ventrally with minimal volume loss, larger lesion dorsally, extending from upper C3 to mid C4 shows moderate volume loss.....additional smaller lesions in right lateral cord at C5 and in right dorsal cord at C6. No evidence of active enhancing lesion."
Unfortunately, no comparison to the previous MRI was done as this was my first vist to this facility in a new city.
When I compare reports, there are six new areas in brain and three new areas in C spine involved. Its possiblei guess that the one in the pons is the old one perhaps missed the last time. but everything else is definitely new. No idea if each of these areas has one lesion or if there are more, since the report doesn't clarify number or size of lesions.
Clinically I have done reasonably well on Copaxone since initiating tx in June 2008. Three relapse since then.
Dec 2008 - ON, tx IVSM, resolved fully within several days of onset.. (Doc said might have been too early for Copaxone to be having full effect, though on the other hand the brevity and full resolution of this episode might be partly attributed to the med.)
July 2011 - moderate relapse mainly sensory symptoms, most resolved over time after IVSM, hand/forearm symptoms were already there and remained after relapse ended.
July 2013 - very mild sensory relapse involving right arm, back. Felt like sunburn. Fully resolved within weeks, no IVSM.
I believe Copaxone has met my expectations clinically; it reduced my relapse rate by more than 1/3, and severity of relapses has reduced dramatically.
I don't really know about meeting expectations MRI-wise. This latest one is worse than I'd hoped for. I would describe myself as stable clinically, and thought that MRI would reflect that.
I think the only lingering remarkable symptom would be the odd sensation in my left leg. It's happened intermittently for about for years. Used to feel like an odd sudden shock while walking or even sometimes while sitting. A paroxysmal symptom I believe it was termed. It's now more of a sudden sense of weakness, no longer a jolt. When active (eg treadmill) it happens about every 10-15 steps. At the same time, I feel like my gait is a bit off, like my right foot is kind of slapping down awkwardly instead of a normal step. I've asked others to observe me and to their untrained eyes apparently what feels clumsy appears totally normal.
OK so I guess I contradicted myself about being clinically stable. But other than the leg, everything else has remained the same. Still have uncomfortable paresthesias, fatigue, mild double vision and dizziness when fatigued, Lhermitte's and Uthoff's. No better, no worse than in 2011 = stable.
Actions I think I need to take:
Provide radiologist with last MRI and ask him to amend report with a comparison. Ask him to be specific re: size and number of lesions.
Advise neuro of the evolution of my leg symptoms, and discuss the possibility / necessity of changing treatment.
Sorry this is long; I wanted to be thorough as I'm really hoping to get your thpughts and opinions / what think you would do if you were in my position.
Thanks!
ps: as mentioned, current and previous MRIs were done on different machines at different facilities interpreted by different radiologists, but both were done on 1.5T machines. I considered that perhaps the new radiologist picked up on some things possibly missed previously, but I think it's too much to hope for to believe that alone would account for such different findings.
DV
I've not responded to you until now because I just didn't feel I had the experience to provide any useful feedback. But I do think your 'actions to take' assessment is sound. I'd also be a little thrown off if my MRI showed potential evidence of things I didn't feel were reflected in my day-to-day (even though we all know, in the abstract, that this can happen). So without offering advice, I'd just like to offer support. Let us know what he/she says.
I've not responded to you until now because I just didn't feel I had the experience to provide any useful feedback. But I do think your 'actions to take' assessment is sound. I'd also be a little thrown off if my MRI showed potential evidence of things I didn't feel were reflected in my day-to-day (even though we all know, in the abstract, that this can happen). So without offering advice, I'd just like to offer support. Let us know what he/she says.
I agree. Your neuro is better qualified to read your MRI anyway.
It does seem like more aggressive treatment would be a good idea.
Sorry about the bad report. Let us know what your neuro says, okay?
It does seem like more aggressive treatment would be a good idea.
Sorry about the bad report. Let us know what your neuro says, okay?
It sounds to me that you have encountered the clinical radiographic paradox - that mysterious point where clinical and MRI evidence don't jive. Usually I think of it as the symptoms are rather obvious but the MRI images don't give the necessary backup.
As depressing as it is, we know that MS is really not stopped by the DMDs, and the disease activity continues in the background. Now you and the neuros have to decide if the copaxone is not keeping the MS activity quiet enough or its time to consider something different. So sorry you are at this crossroad - don't let the doctor just dismiss your concerns.
As depressing as it is, we know that MS is really not stopped by the DMDs, and the disease activity continues in the background. Now you and the neuros have to decide if the copaxone is not keeping the MS activity quiet enough or its time to consider something different. So sorry you are at this crossroad - don't let the doctor just dismiss your concerns.
I am so sorry sweetie, but I ditto Dennis on this, my MRI'S are always compared to the one before, now, I dont know if they compare all of them, but sometimes the radiologist will give opinions on the report too, do they concur with what the Specialist said ???
I'm sorry that you are going through this, the did not find Copaxone worked for me. Now I am on Anonex, but to early to tell yet.
Good thoughts and gentle hugs coming your way
Candy
I'm sorry that you are going through this, the did not find Copaxone worked for me. Now I am on Anonex, but to early to tell yet.
Good thoughts and gentle hugs coming your way
Candy
I'm sorry your new MRI didn't bring you good news.
I had my first MRI on a 1 tesla machine & when I compared this to the 3 tesla MRI I thought there was a lot more new lesions. The radiologist put many of the new findings down to it just being different machines. It's amazing how much more these 3 tesla machines can pick up.
I would consider a change in DMD if your Neuro says there are a lot more new lesions.
Karry.
I had my first MRI on a 1 tesla machine & when I compared this to the 3 tesla MRI I thought there was a lot more new lesions. The radiologist put many of the new findings down to it just being different machines. It's amazing how much more these 3 tesla machines can pick up.
I would consider a change in DMD if your Neuro says there are a lot more new lesions.
Karry.
You could also consider Gilenya? Very good reports coming out on that DMD as more people use it.
Did you just get a copy of the radiologists report or have you seen the neurologist regarding this newest MRI?
Did you just get a copy of the radiologists report or have you seen the neurologist regarding this newest MRI?
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