new lesions :(

[doublevision1]

Got my latest MRI results recently. Three new lesions and an old one that has become more "conspicuous."


"FINDINGS:

Since 2/1/2014, there has been interval development of a 0.8 cm lesion in the anterior corpus callosum, a 0.4 cm lesion at the atrium of the left ventricle, and a lesion in the cisternal segment of the right trigeminal nerve. A lesion involving the right lateral upper cervical cort at the cervicomedullary junction appears more conspicuous than prior study. Pre-existing lesions in the pontomedullary junction, temporal lobes and peritrigonal regions appear unchanged. No actively enhancing lesions identified.

IMPRESSION:
Interval increase in burden of demyelinating disease as described."


My last MRI was in February 2014. I was on Copaxone until August 2014 at which time I switched to Gilenya. My neuro is not too excited about the MRI changes as he points out they could have developed during the eight months I was still on Copaxone. So we can't go by the latest MRI to assess whether Gilenya is working. In hindsight I should've had a baseline MRI at the time I switched meds. Anyway, the nurse said I should discuss with my neuro getting a follow up MRI in August when I'll have been on Gilenya a full year. My next appt at clinic is in about six weeks.

To my knowledge I've had no relapses since summer of 2013. I do feel like my balance has gradually gotten a bit worse, not dramatically so but enough to notice I seem to tip over more than I used to, more little trips and stumbles, and near misses where I catch myself in time. I have more frequent bouts of dizziness accompanied by muffled hearing and ear ringing, though they are very brief, like a few minutes at most. Re: my gait, I start out well on a brisk walk and can make it 30-40 minutes then my right leg  feels weird and gimpy and trippy. With rest I recover pretty quickly. My hands still bother me of course, all the time, and I can tell the right hand is getting as bad as the left. I had to sign some documents at the bank the other day and my handwriting has gone to absolute $hit. I literally fling money out of my hands at cashiers, the coins go flying. My double vision only returns when I'm extremely tired otherwise my eyes are good and no negative effects from Gilenya. My poor concentration is no better but seems no worse than last year. All of the changes are fairly gradual and subtle and overall I don't feel dramatically different than last year. My fatigue level is about the same.

So I wait and see what the next MRI brings, and if lesions are continuing to develop, I guess Tysabri is on the table. As of last summer, I was JC neg.

[doublevision1]

Thanks All. I'm not stressing too much about it yet. Just kind of in wait and see mode. I didn't mention, the latest MRI was done at a different facility than the last one, so I'm wondering if maybe these new lesions aren't new at all but were missed on the last scan. My confidence in MRI reports, or rather in radiologists, has lessened somewhat since I learned last year that at least five lesions were missed on a prior scan done in 2012 at yet a different facility. Meaning I would've very likely decided to make the move from Copaxone to Gilenya at least two years sooner, had I known that my MRI was not as stable as i was led to believe. All water under the bridge at this point, but not giving me a lot of confidence going forward.

[karryon55]

Gee that's pretty cruddy news DV!! I'm sorry to hear this.

Tysabri may be an ideal option for your even maybe Rituximab depending on the criteria in Canada.

Take care,

Karry.

[Corriel]

Oh DV, I am so sorry that you have new lesions despite adhering to therapy and not having any relapses.

A definite bonus about being JC negative though if it becomes something to consider for future treatment.

It is a total bummer not to know if this started with the Copaxone or the Gilenya. If you have noticed the issues you describe from that long ago, maybe it was the Copaxone?

Big hugs from a fellow Canadian,
Corrie

[HVAC]

I am sorry you have new lesions.

Alex

[kwarendorf]

DV - Sorry that your MRI is showing new "beauty marks".  It seems to be evidence of the insidious nature of MS. It is not always cataclysmic changes. It can often be slow, steady, nearly inperceptable advancement.

I can relate to your walking/gait issues as they fairly closely mirror mine. I used to be able to walk 26.2 miles. I used to be able to walk for an hour or more. Now it seems that after about 30 minutes my legs start to be uncooperative. Drip, drip, drip...

This stuff *****..

Kyle

[essdipity]

About the new lesions, a big boo. I agree that it's hard to know about Gilenya, given the timing of your MRIs. Did they do the spine as well?

I'm more or less in the same circumstances, with MRIs in March but next neuro exam in July, having fully started Tec last September. I'm having a couple of subtle new issues or slight expansion of old ones, nothing awful, but still I have to wonder. As to MRIs, I don't know how they can tell if there's anything new, given the huge long 'confluent' blobs superimposed on old huge long confluent blobs around the ventricles. They did comment on a pons lesion this last time, same as seen in '13, except that in '13 and '14 the radiology report never mentioned these.

Well, the best news for you is that these lesions are largely silent. I guess you have no choice but to await the summer MRIs and see what turns up. It's good you are thus far JC neg., for potential Tysabri purposes. Apparently in the US, 75% are JC pos, so it constantly surprises me how many nevertheless are eligible. Haven't gotten there yet, and I don't know my JC status.

Keep on keepin' on. What else can you do?

ess

[Poppy7402]

Sorry to read this doublevision.  Pleased you're still JC negative though - this at least gives you some choices if they're needed.

Poppy

[bbassel]

I am so sorry! I was also on copaxone and when I had my mri of spine and brain they lit up like a xmas tree. I knew it would be bad because I had three or four relapses that year. I didn't know it would be that bad though.

I got switched to tysabri and since then have had no relapses. I just had my mri done and it was clear for new lesions.

I hope your next mri shows that everything is working out for you now with gilenya. Hopefully. You won't have to switch medications againm

Barb