not thrilled with my latest MRI / what to do now?

[doublevision1]

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.

[Cann1980]

Thinking of you DV !! Hope the research is going well :)

[rendean]

I like your approach and LOVE your GP!! He is so proactive and compassionate about getting what his patients need. You have a winner!!

Keep us updated about your JC status!

Best,
Ren

[rendean]

I like your approach and LOVE your GP!! He is so proactive and compassionate about getting what his patients need. You have a winner!!

Keep us updated about your JC status!

Best,
Ren

[kwarendorf]

Hi DV-

I understand not wanting to p*ss off your MS people, but at some point what they want needs to take a back seat to what you want :-)

Kyle

[anon07072023]

Oh, sounds like you have a great GP!!  Anything to move things along... :-)

[doublevision1]

Sorry, wasn't totally clear, I meant to say that the friend of my GP who would look at my MRIs is a neuro radiologist.

[doublevision1]

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................

[Cann1980]

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

[doublevision1]

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.

[essdipity]

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

[anon07072023]

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.

[Cann1980]

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

[kwarendorf]

Hi DV - Sometimes the (slightly) squeaky wheel gets the oil :-)

Sounds to me like you're getting pretty good care at the Major Mondo MS Clinic. I find that I can get as much accomplished, more efficiently, talking with the NP rather than trying to talk with the doc.

I can't speak to Gilenya, but I was a big Tysabri fan. I had no adverse reactions of any kind and I loved the once a month infusions, rather than daily/weekly injections. It just stopped working...

Kyle

[doublevision1]

Back from the East coast for a week now and finally getting around to updating.

I've spoken with a MS nurse about my concerns. Initially I was frustrated as it didn't sound d like much would happen to flag my concerns to my neuro. I was also dismayed to be told that his schedule is booked solid and he couldn't see me any time sooner than April or May (my annual appt) unless I was so bad off that I ended up in the ER, because he is so busy doing research and supervising interns and residents. This left me feeling like what's the point of being seen at a world class facility if patients aren't a priority, perhaps I'd be better off with a general neuro in private practice who has time to see me.  Though it also made me wonder if she was hinting at how to get seen sooner, without outright encouraging me to use the ER.

She talked to one of the more experienced nurses, who spoke to my neuro, then the more experienced one called me back. Said neuro is not especially concerned since none of my lesions enhanced so I'm 'not having a relapse, and that's a good thing' (???). But that he agrees a comparison to the last one must be done and they would order it from the previous facility I attended, and ask their in-house radiologist (who isn't a neuro radiologist) to compare and issue a new report, then my doc would review them both himself and we can discuss.

The nurse was great, she asked me if I want to change meds regardless of what the new report said. This made me feel like the decision is mostly or at least partly mine and not just the doc's. She talked to me for quite a while about the options, offered to send me into, seemed to favour Gilenya over Tysabri (risk vs reward ratio). She talked to me about the risks of both. She encouraged me to call back in a week or two so that I don't fall through the cracks.

In the meantime I called the previous MRI facility to make sure they'd gotten the request for the CD from the MS clinic here. As of four days later, they had not. The records clerk was so great, she called me after hours last night to let me know that she'd gone ahead and copied it and it was packed and ready to go out, she just needed the mailing info and doc's name. She said she didn't want to leave me waiting and worrying about it so she wasn't going to sit on it and wait for them to ask. Geez some people are just really so nice and accommodating, it warms my heart. :)

So it's on its way, and hopefully I'll have some feedback within a week or two. Will keep you posted. In the meantime I'm immersing myself in Tysabri and Gilenya literature, and reading lots of old posts here which are really helpful.

[doublevision1]

Thanks All for your wise comments. Sorry for my tardy acknowledgement, I'm travelling on the East coast at the moment, just got in on a red eye and going to hit the sack.  I will take some time to thoroughly reply to you over the next few days. Thanks!

[anon07072023]

I think your idea of asking the radiologist to review your previous MRI images and compare them to the more recent ones sounds like a good plan.

I know my old neuro found lots more lesions than was noted by the radiologist when he reviewed my MRI.

Also, you have to think about your symptoms - progression, etc.

Good luck with everything.

[rendean]

Hi DV,

I tend to agree with you about having the radiologist read and compare your MRIs, especially a neuroradiologist as that is their expertise and could possibly shed some light on the lesions and whether the last MRI was truly that different and to what degree.

In my opinion, I think it's time for a new DMD given an increase in lesions despite little change in your overall symptoms. As Laura said, the disease continues to march on despite the lack of physical symptoms.

Tysabri has done well for me but I'm at dose #30 and at my recent neuro appt., I was again asked if I wanted to change treatments due to my current dose level. I declined since I am still JC negative, but he did like the success rate of Tecfidera and Gilyena. Just food for thought.

Sorry you've had this turn of events and I wish you the best in setting out to remedy this situation and prevent any further damage.

Hugs,
Ren

[kwarendorf]

Hi DV -

I think I'm with Laura on this one. For me the most important thing is the clinical side of things. "How do I feel?" The relapse/symptom timeline you gave seems to show that things are pretty stable.

As you mention, MRIs done on different equipment, read by different people can be difficult to correlate. As Laura mentioned, all available DMD's are aimed at slowing, not stopping, the progression of MS. I think we all like to pretend that our personal disease has stopped moving forward :-)

I would certainly make the images and radiology reports from past MRI's available to current Neuro. They may or may not do anything with them, but it can't hurt.

Kyle

[immisceo]

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.

[maxthecat43]

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?

[Lulu54]

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.

[candy158]

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

[karryon55]

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.

[Kwazii]

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?