Aa
Almost ready for my MRI follow-up on Rebif
So I called to book the MRI. As its a follow up i wanted to go to the place I have been going this whole time. The MRI is a 1.5T but I have plenty of lesions so you see lots. I am really scared what a 3.0T would show. The lady on the phone was insisting I use the 3.0T at a different hosp. I said no I want the same machine because we are comparing studies. My last one being oct time. I was on the phone fighting for 30mins. Then called my doc, who said "I don't care..." and me the scientist still wanted the 1.5T, as the 3.0T might show new lesions but we will not know if they are new or its a better image and just see more. My doc might not even pick up on that and say Rebif is not working when it might be!! I got the 1.5T, so I won the battle. However now i wonder if I was right?? What do you think??
BTW Oct MRI looked pretty good and Dr thinks Rebif is working!! This is just a follow up double check. Sorry I may have said that before.
BTW Oct MRI looked pretty good and Dr thinks Rebif is working!! This is just a follow up double check. Sorry I may have said that before.
I'm just seeing that you received wonderful news. So happy for you :)
Hooray!
Keep fighting the good fight, so happy you!
Lizzie
Hooray!
Keep fighting the good fight, so happy you!
Lizzie
Haha sarah, maybe that is good news :) after all lesion load is not equal to disability :)
Corrie, I love my rebif its working for me.
So had my Neuro appointment and he's really happy! Said the rebif is working and so I will stay on it. We did the routine tests and found my left leg is stronger than before!! My walk has improved too!! Yay :)
Corrie, I love my rebif its working for me.
So had my Neuro appointment and he's really happy! Said the rebif is working and so I will stay on it. We did the routine tests and found my left leg is stronger than before!! My walk has improved too!! Yay :)
That's great news!
My new pacemaker company won't let me have any more MRI's, so I will never know if mine are staying the same or multiplying. Perhaps that's good news as well. LOL
My new pacemaker company won't let me have any more MRI's, so I will never know if mine are staying the same or multiplying. Perhaps that's good news as well. LOL
Woohoo, good to know Rebif is working out for you. I have been on it for about 8 months now so my fingers are crossed.
While it is a bummer about the black holes, hopefully you will not have to worry about future ones.
Good luck with the neuro appointment.
Corrie
While it is a bummer about the black holes, hopefully you will not have to worry about future ones.
Good luck with the neuro appointment.
Corrie
Thanks for the feedback guys!! I was just reading my first (only!) journal entry and its very eye opening. I was so worried about taking a CRAB and was on the fence about it, thinking they didn't work etc. I thought 33% decrease in relapses was not great and maybe not worth the DMD side effects. Now I'm very attached to my rebif and freak out if a shipment is late. See my post WARNING this is a rant.... ;)
So I guess my message for any newly Dx, don't turn down the CRABs because some people say they don't work, Don't be discouraged if you try one and it doesn't work. Copaxone didn't work for me, but Rebif seems to be working (whole year no new lesions). Please take a DMD!!
So I guess my message for any newly Dx, don't turn down the CRABs because some people say they don't work, Don't be discouraged if you try one and it doesn't work. Copaxone didn't work for me, but Rebif seems to be working (whole year no new lesions). Please take a DMD!!
Oh, Yay!! I'm so glad things are stable for you!! I had a follow-up MRI a year ago with the same results (I've been on Tysabri for 4 years, now). So reassuring!
So elated to hear your wonderful news! This is wonderful for you and your husband. Wishes for continued positive feedback at your appointment!
Lizzie
Lizzie
Wooo hoooo! No new lesions.....that is terrific news. :-)
I had no idea that T1 hypointensities meant black holes. Wow you learn something every day lol. Sorry about the black holes news but still great news about no new lesions. I also had a 5 month follow up MRI recently with no new lesions as well. Maybe 2014 is going to be a good year for us.
Karry.
I had no idea that T1 hypointensities meant black holes. Wow you learn something every day lol. Sorry about the black holes news but still great news about no new lesions. I also had a 5 month follow up MRI recently with no new lesions as well. Maybe 2014 is going to be a good year for us.
Karry.
Hey All!! So I picked up my MRI results! Seeing the neuro next week but like to know results before I go, if it's bad news I don't have time to digest and think in his office and miss so many questions I would like to ask. Anyway, I went with the 1.5T and plan to talk to my Neuro about the 3T next week.
I just wanted to let you know the results.... NO NEW LESIONS!! the word "stable" was used :). So I'm feeling pretty good about that. Sadly some did turn into T1 hypo, black holes. The word "several" T1 hypointensities was used. I took a look and yep I see them, I would have to go back to see if they are on a previous MRI.
All in all, I am relieved! seems Rebif is working for me!! Hopefully I have a happy Dr next week too!! I'll update you on how that goes :)
I just wanted to let you know the results.... NO NEW LESIONS!! the word "stable" was used :). So I'm feeling pretty good about that. Sadly some did turn into T1 hypo, black holes. The word "several" T1 hypointensities was used. I took a look and yep I see them, I would have to go back to see if they are on a previous MRI.
All in all, I am relieved! seems Rebif is working for me!! Hopefully I have a happy Dr next week too!! I'll update you on how that goes :)
Echoing the 3T preference. Even if the 3T shows more lesions, your neuro might not jump to the conclusion your Rebif isn't working. S/he knows the resolution of a 3T machine is better, and will show more lesions. Also, remember, lesions and symptoms don't always correlate. There are people with few lesions and lots of symptoms, and people with a head full of lesions and few symptoms.
I see your conundrum, and completely get where you're coming from in regards to wanting an apples to apples comparison. I would want that too. But it is a very good point that in future 3T may become the standard, though I expect that might take a while given the cost of these machines.
If it were me, I'd go with their referral on a 3T given the higher cost of the testing, and I'd pay out of pocket for one on the same 1.5T machine I'd had previously. I'd do so within a short time frame so that nothing ought to have actually changed in my CNS. Then I'd see what the radiologists but especially the neuro have to say about any varying results. From that point forward, with my new baseline being on a 3T, I would carry on with that same new machine. Of course it isn't always possible or feasible to have MRIs done on the same machine forever - my next one will be on a different machine as I've moved cities - but whenever you can get an apples to apples comparison I think that's optimal.
It's probably overkill and I know for sure my neuro would think so, but I too am very curious and would want as much data as possible so my status is understood as much as possible. There's no way that my provincial health care would cover two scans back to back, so I'd use a private clinic, which charge several hundred dollars. It would be worth it to me. Prices vary wildly depending on location, facility, etc. For example, what would cost me a several hundred dollars here would cost several thousand dollars at the Partners MS Clinic in Boston affiliated with Harvard University, where I was seen a few years back. I'm sure there are many reasons for the variance not the least of which would be qualifications of the radiologist (radiologist vs. neuro-radiologist), but I couldn't justify paying several thousand for a perfectly good MRI that is 100% covered by my govt health care and well under $1K for out of pocket.
Anyway I don't know whether such options are available to you but just another suggestion to consider.
Good luck whichever route you choose take!
If it were me, I'd go with their referral on a 3T given the higher cost of the testing, and I'd pay out of pocket for one on the same 1.5T machine I'd had previously. I'd do so within a short time frame so that nothing ought to have actually changed in my CNS. Then I'd see what the radiologists but especially the neuro have to say about any varying results. From that point forward, with my new baseline being on a 3T, I would carry on with that same new machine. Of course it isn't always possible or feasible to have MRIs done on the same machine forever - my next one will be on a different machine as I've moved cities - but whenever you can get an apples to apples comparison I think that's optimal.
It's probably overkill and I know for sure my neuro would think so, but I too am very curious and would want as much data as possible so my status is understood as much as possible. There's no way that my provincial health care would cover two scans back to back, so I'd use a private clinic, which charge several hundred dollars. It would be worth it to me. Prices vary wildly depending on location, facility, etc. For example, what would cost me a several hundred dollars here would cost several thousand dollars at the Partners MS Clinic in Boston affiliated with Harvard University, where I was seen a few years back. I'm sure there are many reasons for the variance not the least of which would be qualifications of the radiologist (radiologist vs. neuro-radiologist), but I couldn't justify paying several thousand for a perfectly good MRI that is 100% covered by my govt health care and well under $1K for out of pocket.
Anyway I don't know whether such options are available to you but just another suggestion to consider.
Good luck whichever route you choose take!
Yeah I'm the sort of person that wants to know everything! I even look though my own MRI scans, looking for the ones that were missed... but the baby thing, yeah, I really do want to do that and don't want to worry about reimaging again in 3 months...
Ummm you guys are really making me re-think my choice now.... hahaha.... but then I would have to call again. Until today I didn't even know I was using a lower 1.5T, or i did know but didn't think about it. Then they offered the 3.0T today and pushed for it. I was just worried about it messing up my comparisons. You know, limit the variables! but to be honest I'm scared to see the extra lesions.... arrggghhh so much back and forth over a simple decision!!
Oh sorry I didn't know you were wanting to try for a baby. That makes sense now & I can understand more of where you are coming from.
Karry.
Karry.
I'm the sort of person that would want to know as much as I can in regards to lesions so I would go for the 3 tesla machine. I never thought I could have anything but a 1.5 tesla because I have an infuser port in my chest but I have had a 3 tesla done now. I can't stay in too long & will not be able to go higher than 3 tesla in the future.
In regards to comparison they only had the 1.5 t MRI without contrast to compare with & the radiologist can say that other than a new spinal cord lesion there was nothing specifically new. I look at both reports & think well I can see differences but it can be said that the 3 t MRI simply made it clearer for the ? Lesions on the 1.5 t machine to be confirmed. I hope that is making sense. :-)
If the 3 t MRI brought up a new lesion(s) & your Neuro suggests new treatment. I think you have every right to say no (if you are inclined) & suggest you rethink your treatment on your next MRI. If I had new lesions then I would certainly look at what my Neuro is suggesting.
The difference between the two in regards to comfort was huge for me. The 3 tesla was more ergonomic & comfortable which made it easier on my arthritic body. Whatever you choose I wish you the very best.
Take care,
Karry.
In regards to comparison they only had the 1.5 t MRI without contrast to compare with & the radiologist can say that other than a new spinal cord lesion there was nothing specifically new. I look at both reports & think well I can see differences but it can be said that the 3 t MRI simply made it clearer for the ? Lesions on the 1.5 t machine to be confirmed. I hope that is making sense. :-)
If the 3 t MRI brought up a new lesion(s) & your Neuro suggests new treatment. I think you have every right to say no (if you are inclined) & suggest you rethink your treatment on your next MRI. If I had new lesions then I would certainly look at what my Neuro is suggesting.
The difference between the two in regards to comfort was huge for me. The 3 tesla was more ergonomic & comfortable which made it easier on my arthritic body. Whatever you choose I wish you the very best.
Take care,
Karry.
Umm thats some good input! I didn't even think of that!! I was just so worried about these extra lesions showing up and confusing me and my Dr. The next MRI I will def get the 3.0T but this time I'll stick with the 1.5T. I would hate to hear " well lets wait another 3 months and check again.." It's not that I don't like the "check-ups" but I am kind of thinking about maybe trying for a baby. I have already waited 3 months to start trying as my dr wanted to make sure rebif was working. I agreed it was a good idea. I think If i hear lets wait again as i can't compare MRIs I'll feel sad.... life is so much more complicated with MS, don't you think?
Darn, that is a good question and I am sorry I don't have much to offer except if they use contrast only newer lesions will be enhanced so even if more show up, if they are not enhanced, it is likely they are older.
I am on Rebif too (7 months) but my neuro is only seeing me in 5 months and unless there are big changes in my symptoms or a major relapse he said it could be a couple of years before my next MRI.
I think I would go with the 3.0 because down the road it may be all that is available so it will need to be a baseline sooner ir later.
Good luck!
Corrie
I am on Rebif too (7 months) but my neuro is only seeing me in 5 months and unless there are big changes in my symptoms or a major relapse he said it could be a couple of years before my next MRI.
I think I would go with the 3.0 because down the road it may be all that is available so it will need to be a baseline sooner ir later.
Good luck!
Corrie
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