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I was dx 2 years ago after brain MRI, cervical spine MRI, and spinal tap. Since then, I have been on Rebif therapy (and doing well!) I asked my neuro if I should have another MRI and she said that I really didn't need one since the dx was conclusive and since lesions come and go, it really would just muddy the waters.
I'd like to know what others have experienced in terms of follow up MRIs. Wouldn't I need one to see how I'm responding to Rebif therapy or is there another test for that?
Also, did I read something that after time my body can build up antibodies or proteins causing the Rebif to no longer work? How do I know if that happens?
1. No follow-up MRI unless needed. Need would be dictated by occurence of significant NEW symptoms. In other words, major relaspse(s) in spite of the Rebif. (My Neuro)
2. Yes there is another test for that.
- How are you doing?
- OK.
- Rebif is doing its job - or do you want to take a chance by stopping it to find out for sure. (My GP).
3. Test for antibodies - pick an answer:
Sounds like an interesting idea but I have no idea how to order such a test. (My GP)
Yes, it can be done but its too expensive and results mean little. (My neuro)
Not very important as the production of antibodies will cease and things will go back to normal. (an article I read online somewhere)
My neuro's thought on follow-up MRIs is: would we make a change in my therapy based on new MRI results? I had a follow-up MRI after 6 months on Rebif. Externally, I was doing just fine, but we all know that disease activity doesn't correlate well with symptoms. We decided if my brain had been flowering with lots of new lesions (it wasn't), we would consider a different therapy. I've had 2 (or is it 3 now?) other MRIs in the 2.5 years since. Each was after appearance of new symptoms. I should explain that all my symptoms have been very mild (and each has been more mild than the last) and they have all been temporary. I am, however, being extremely aggressive with my monitoring of this disease and my neuro is fine with that. We get along well and seem to be on the same page.
All my MRIs have been virtually identical to one another (any differences could easily be attributed to the slightly different angle of the imagery). On a side note, it's kind of cool to see the images side-by-side, and step through the series of pictures. I think some of my symptoms have probably been caused by inflammation in my spine, but I've never had an MRI beyond the brain and brainstem. My neuro's thought on this is that the vast majority of myelin and axon material is in the brain and brainstem and so if there's any disease associated inflammation, you should pick it up with the brain MRI. For this reason, he thinks the spinal MRI is an unnecessary expense. I haven't pushed this point, but may some day.
As for neutralizing antibodies, I had a blood test for this when I had one of these new mild symptoms. I can't remember if this was around 6 or 12 months after starting Rebif. The levels were indeed a little elevated, but not alarmingly so. So I stayed the course and was re-tested 6 months later, when the levels had dropped back down. I've heard/read that this pattern of temporary elevation of NAbs is fairly common.
i went for a year followup with my peripheral neuro the other day (haven't heard much from my ms clinic since i decided against the rebif).
after a chat with my neuro about what i was doing, how i was doing, he asked me if there was anything else he could do today...? and i said 'um, a followup mri maybe?' and he said 'sure!' and did the paperwork right away. i could choose a spine only and wait 2 months, or spine+brain and wait 4 months. since i'm moving away for the summer we made it for september. i can tell you that this made me really appreciate my original mri experience where i was referred to him by my family doc, and coincidentally ended up having my dx attack the week of my appointment wth him, and he got me in that machine the same day, and i had another one for the brain very soon after. and the LP. ugh! it was a whirlwind of medical speed.
so, i haven't had to try to talk anyone into an mri. he practically handed it to me on a platter.
my experience with neuros has been that they like to do an MRI every year or every few years at least to monitor disease progression. I'm surprised yours would say "lesions come and go," as i would think that more lesions while being on therapy is not a good thing.
Vicki
