Aa
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.
Thanks Cann......I joined a few Gilenya & Tysabri groups on Facebook. Turned out the first couple I joined were not English but I didn't know it until I was accepted into those groups. Unfortunately I do not speak Danish or Dutch, lol.
UPDATE:
I heard from the MS nurse the other day who was just updating me that they'd received my previous MRI and it has been sent along with the latest MRI to one of their radiologists to review. She said it may take 3-4 weeks to hear back! I will be surprised if it takes so long but we'll see.
She also said that the neuro will not order the JC virus blood test at this time, at least until the MRI report is back, and that we'll cross that bridge when we come to it. This annoyed me, it's just a lousy blood test. I'd like to know my JC status now, as I am in the process of learning as much as I can about Tysabri, JC status, PML risk, as well as Gilenya - which apparently can also cause PML, I have read. ?
Anyway, I didn't argue it with her as I've learned to pick my battles and figure out more than one way to get something done. So I promptly called my GPs office and got an appt for today. He very willingly ordered the test for me, and I had it done immediately afterwards at the lab next door. We also discussed my MRI changes. He offered to have a friend of his unofficially review my last two MRIs and pass along his impressions. This appeals to me as the radiologist who the MS clinic is using is not a neuro radiologist, just a general one. So I need to go digging and try to fine that old MRI to drop off to my GP. I know I need to be careful and not blatantly step on the toes of my neuro & MS nurse, but if my GP is willing to go the extra mile for me, I'm certainly not going to refuse the offer. I've been so lucky with getting great GPs. I think this one is extra understanding as his wife has MS.
Fingers crossed I am JC neg................
UPDATE:
I heard from the MS nurse the other day who was just updating me that they'd received my previous MRI and it has been sent along with the latest MRI to one of their radiologists to review. She said it may take 3-4 weeks to hear back! I will be surprised if it takes so long but we'll see.
She also said that the neuro will not order the JC virus blood test at this time, at least until the MRI report is back, and that we'll cross that bridge when we come to it. This annoyed me, it's just a lousy blood test. I'd like to know my JC status now, as I am in the process of learning as much as I can about Tysabri, JC status, PML risk, as well as Gilenya - which apparently can also cause PML, I have read. ?
Anyway, I didn't argue it with her as I've learned to pick my battles and figure out more than one way to get something done. So I promptly called my GPs office and got an appt for today. He very willingly ordered the test for me, and I had it done immediately afterwards at the lab next door. We also discussed my MRI changes. He offered to have a friend of his unofficially review my last two MRIs and pass along his impressions. This appeals to me as the radiologist who the MS clinic is using is not a neuro radiologist, just a general one. So I need to go digging and try to fine that old MRI to drop off to my GP. I know I need to be careful and not blatantly step on the toes of my neuro & MS nurse, but if my GP is willing to go the extra mile for me, I'm certainly not going to refuse the offer. I've been so lucky with getting great GPs. I think this one is extra understanding as his wife has MS.
Fingers crossed I am JC neg................
DV... You know yourself best!!
Your choice to move forward to a new DMD can only be beneficial to you in my eyes
I am sure your doc will agree wearer it is by MRI or symptoms
Good luck with the research :)
There is a great group on Facebook for Gilenya as well you may want to join. I observe and have found many reassuring comments
Your choice to move forward to a new DMD can only be beneficial to you in my eyes
I am sure your doc will agree wearer it is by MRI or symptoms
Good luck with the research :)
There is a great group on Facebook for Gilenya as well you may want to join. I observe and have found many reassuring comments
Thanks for the Gilenya and Tysabri advice, folks. Ess, I agree, that comment made no sense, and I wanted to say "well if I'd had one last summer like I'd wanted, it would have lit up and so what difference would that have made.???" I would have argued the point were it not my greater concern and focus to get him to look at my last MRI and compare the two. Also to make sure they understood, it's not just my MRI that concerns me, it's also the weird leg thingy that troubles me, and the implications of both of these things, together. Also, when dealing with the neuro through the nurse I will give the latter the benefit of the doubt as I have no idea if that's precisely what he said or meant to say or whatever.
Now that I've been in this game for several years, I am actually more concerned with my GPs knowledge and attention than my neuro's. Sounds odd maybe, and I'm not saying I'd be happy to have an outright incompetent neuro. I say that because on average I have seen a neuro once a year, or a tad more often maybe. I see a GP far more frequently and have been lucky to have either really good ones, or okay ones who didn't mind, in fact who seemed to welcome major direction from me.....on testing, meds, paperwork for LTD, etc. I've dealt with so many neuro's, mostly short term, only one long term, and honestly it seemed to me they all talked in circles in one regard or another. The nurses too. I don't know if it's because there are still so many unknowns about MS or if that's the case in other specialties too. For sure I will look to this new guy (new to me - I have only seen him once) for his view on Gilenya and Tysabri, but I have a feeling I'll be more steered by my own research. I'm okay with that. I have always preferred to feel like I'm in the driver's seat, so as long as he doesn't say absolutely no to either med, then I'll live with the occasional (hopefully that's all it is) illogical statement. Perhaps I'd feel differently if I was in worse shape, I don't know. I'm totally prepared to move on from any doc who won't give me the care I think I need and who can't give me a good reason to explain why.
Hopefully soon I will have his feedback on the MRIs and a new plan. In my head I've already moved on from Copaxone, despite the fact that I'm still faithfully doing my needle every night.
Now that I've been in this game for several years, I am actually more concerned with my GPs knowledge and attention than my neuro's. Sounds odd maybe, and I'm not saying I'd be happy to have an outright incompetent neuro. I say that because on average I have seen a neuro once a year, or a tad more often maybe. I see a GP far more frequently and have been lucky to have either really good ones, or okay ones who didn't mind, in fact who seemed to welcome major direction from me.....on testing, meds, paperwork for LTD, etc. I've dealt with so many neuro's, mostly short term, only one long term, and honestly it seemed to me they all talked in circles in one regard or another. The nurses too. I don't know if it's because there are still so many unknowns about MS or if that's the case in other specialties too. For sure I will look to this new guy (new to me - I have only seen him once) for his view on Gilenya and Tysabri, but I have a feeling I'll be more steered by my own research. I'm okay with that. I have always preferred to feel like I'm in the driver's seat, so as long as he doesn't say absolutely no to either med, then I'll live with the occasional (hopefully that's all it is) illogical statement. Perhaps I'd feel differently if I was in worse shape, I don't know. I'm totally prepared to move on from any doc who won't give me the care I think I need and who can't give me a good reason to explain why.
Hopefully soon I will have his feedback on the MRIs and a new plan. In my head I've already moved on from Copaxone, despite the fact that I'm still faithfully doing my needle every night.
What? You're not having a relapse because there were no enhancing lesions??? This makes no sense at all. As if only new lesions can cause a relapse.
This neuro's credibility would be shot for me, based on that, because who knows what the next bizarre thing he says will be. Also, regardless of whether you're having a relapse, I didn't think that was the point of your inquiry. You have loads of new lesions, or so it seems, so it also seems that Copaxone is no longer doing its job. I'd be wondering what would have to happen for him to actually be concerned.
I agree--wait for radiological review before doing anything or drawing any conclusions. But meanwhile I'd be reviewing my options for future neuro care.
Just my $.02.
ess
This neuro's credibility would be shot for me, based on that, because who knows what the next bizarre thing he says will be. Also, regardless of whether you're having a relapse, I didn't think that was the point of your inquiry. You have loads of new lesions, or so it seems, so it also seems that Copaxone is no longer doing its job. I'd be wondering what would have to happen for him to actually be concerned.
I agree--wait for radiological review before doing anything or drawing any conclusions. But meanwhile I'd be reviewing my options for future neuro care.
Just my $.02.
ess
Well, at least it seems like things are working themselves out for you. It's good that you followed up with them. I'm not sure on either one of the other DMDs. I'm afraid of both of them.
DV ..
So much information.. I can't comment on it all but I will give my newbie advice :):)
My MRI had only one new lesion and possibly a start if another (6months) .. Only one of the many minions in there lit up .. The new one in my c spine lit up.
So my neuros take in the MRI was that I was probably ok to stick with Rebif ... BUT .. He wanted to go over what this meant in my symptoms .. What's new .. What's bothersome..
It was the symptoms effecting me that had him switch me to Gilenya not the MRI itself.
If you have any questions about the Gilenya let me know.. I am day 6 today :) I have to say taking a pill is grand instead of the injections!
As far as choice between Gilenya and tysabri I am with your ms nurse (the positive results bundled with less side effects..yahoo)
I also still have tysabri as a next step too if need be .. I am happy so far with choice but only time will tell
So much information.. I can't comment on it all but I will give my newbie advice :):)
My MRI had only one new lesion and possibly a start if another (6months) .. Only one of the many minions in there lit up .. The new one in my c spine lit up.
So my neuros take in the MRI was that I was probably ok to stick with Rebif ... BUT .. He wanted to go over what this meant in my symptoms .. What's new .. What's bothersome..
It was the symptoms effecting me that had him switch me to Gilenya not the MRI itself.
If you have any questions about the Gilenya let me know.. I am day 6 today :) I have to say taking a pill is grand instead of the injections!
As far as choice between Gilenya and tysabri I am with your ms nurse (the positive results bundled with less side effects..yahoo)
I also still have tysabri as a next step too if need be .. I am happy so far with choice but only time will tell
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