SPMS and MRIs

[ssusan]

3 years ago, the last time I had MRIs my MS Neuro said that because I am SPMS MRIs didn’t show anything.
I haven’t had one since butmy MS is clearly progressing big time. I asked for new ones. What
Are your thoughts?
-Susan

[Virginia]

I don't know Ssusan. I am SPMS and I got them for a number of years, but they didn't change, so I haven't had one in more than 3 years and have no intentions of getting one anymore. However, my reasoning is based on the fact that I am on a DMD, but cannot change because all the new ones that might help me more can deplete B cells which causes infections to start up. I am more at risk for this because I am older. I can't remember if you are on a DMD or not, but if you have no intentions of going on one or changing (if you are on one) then what would it prove? That is where I am at.

However, if you just have some curiosity regardless of whether or not you plan to make any changes and you don't mind having an MRI just ask for one. This is just my opinion.

Nice to see you.

[ssusan]

Thank you. That is my dr’s thinking. I am on Ocrevus.
I am too much at a risk of infection, to go on any other
Currently available treatment.
I am going to call BCBS. I received a letter on Thursday
That I don’t understand. I have reached my limit.
I need to do the Ocrevus in December. Breaking mY
Hip was really expensive. Your comment helped a lot.

[Sunshine]

Hi ssusan. I guess I would wonder what the goal is for an MRI? Are they ruling something else out which could account for worsening other than SPMS?

That was a reason my neuro did a follow up brain MRI last year: To be sure an incidental finding of pituitary adenoma showed no progression, for example.

Ocrevus can impact infection, I thought. My immunologist who diagnosed me with common variable immune deficiency syndrome nixed ocrevus and Rituximab due to the CVID for example

[Virginia]

Ssusan, I was thinking about this and for most people I think it takes at least two years (maybe 2 1/2) for Ocrevus to begin to work. So, if you are having problems and have not been on it steady for at least two years, my opinion is, barring infections I would stick with it. That is what I wanted, but they were afraid it would create problems for me with infections.

It has a reputation of being a good med and I would tend to stick with it unless you are having a lot of infections.

[ssusan]

Thanks, Virginia. That’s encouraging. I have been on it for 2 years but I was unable to do my infusion in February after breaking my hip in January.i finally was able to do it in June. I may have had a response this past time.Maybe. I’ll be patient I guess.i had not heard the 2 years.i have not had a problem with infections apart from UTIs.i know I am at risk
Of infection. I wash my hands constantly. That was helpful info. I appreciate it.

[Lazarus]

I had about 75 active lesions on my first mri..for the last 20 years at least nothing shows up. And yet my MS is progressing.

Someone posted a while ago about a different MRI that gave more/deeper information.