Stable MRIs, worsening pain/spasticity and leg weakness.

[CatsandCars]

I had to change neurologists a few years ago due to insurance, which has been really unfortunate since my MS seems to be getting worse and my neuro and his nurse/practitioner seem to be completely blown away by the fact that my MRIs are stable, but my MS is getting worse. Surely this is not unheard of?

[starlight5]

It is very common as one gets older to have stable mri's, yet have an increase in existing symptoms. I am surprised that your neuro and np seemed "blown away" by this, if they have not mentioned secondary progressive ms or smoldering ms to you, I would consider changing to a new neuro, one who specializes in ms.

Are you currently on a dmt

[CatsandCars in reply to starlight5]

Thanks for replying. I am planning to change to a neuro who is an MS specialist in January when new insurance will kick in. I have been on Ocrevus for a few years now.

I saw my GYN recently and she said "I'm not an MS specialist and even I know that from talking to my patients."

It's been really stressful and scary having all these weird symptoms and having to rely on a doctor/np who seem to be in over their heads. I was stable for many years and didn't expect that things would ever worsen to the point that they have.

[Greentime in reply to starlight5]

I just googled smouldering MS. I have a lot to learn about that and aging with MS. Thank you.

[Helpmeup]

Your neuro and his n.p. don't seem to know very much about the course of M.S. and MRI's. Over the years, I have known people with stable MRI's and worsening symptoms and known people who have more lesions on MRI with no worsening symptoms. MRI does not give a complete picture of where your disease is at or where it might go. It is only a piece of the M.S. puzzle. It is very common, especially as we age, for symptoms to increase. I see you are planning to change doctors at the new year. Sounds like a good plan. You can go to a specialist or find a neuro who sees a large number of M.S. patients and will have a better understanding of your needs. Best of luck and take care.

[CatsandCars]

Thanks, help me up.

[Neworleanslady]

that sounds like me. Smoldering ms. I think Ocrevus is a good dmt to be on. I believe smoldering ms is not unusual

[ahrogers]

I am in the same boat. I have been on Ocrevus since 2016 with no new lesions. I did have quit a bit of damage by that time though. That damage is slowly rearing its ugly head. My symptoms do correlate with those lesions and are slowly progressing. At least preventing new lesions should prevent symptoms from new damaged areas of the CNS.

Hopefully, your next neuro can review the location of your old lesions and let you know what to expect from damage in those areas. You can probably find some info on the internet if you have your MRI reports that indicate where the damage is. My brain MRI reports don't specify the location of lesions, just that there were more than 10 when I was diagnosed. The spine MRIs do indicate where in the cervical and thoracic cord the damage is done though.

I hope you find a great neuro!

[sashaming1]

I understand that standard MRIs don't show results of the entire brain - either only the white matter or only the grey matter. FYI

[StacyHayward]

pretty much where I am. Haven’t had a relapse in years, mri is unchanging, but still slowly declining. I talked to my neuro and he said I’m at a secondary progressive point. But I started an aerobics class about two years ago and I’ve seen major improvements in my body! So I seem to be fighting back!

[Mark1499]

Probably not. I know I’ve experienced the same thing. I believe there’s still a lot experts just DONT KNOW!

[CatsandCars]

ahrogers, that's an interesting correlation between old lesions and current symptoms. I will ask about that.

Stacy, it's great you are able to do aerobics and that it's helping you.

Thanks everyone, for replying.

[Jesmcd2 CommunityAmbassador]

Hi CatsandCars l am so glad that you are changing Neuros! If you can find one sooner, try to do that. I personaly cant belived they said that! Although everyones MS is different, some do progress /w symptoms. You can read abit about it here! mymsaa.org/ms-information/o...

🤗💕🌠

[mrsmike9]

I just read an article about this subject. The MRIs don't see both the grey and white matter in the brain. There are special MRI machines that can see both. I sure wish we could all be scanned in those to get a better picture of what's going on.

[Elizt3]

sounds like me. my mris have been stable since at least 2019 when I started Ocrevus, but i'm continuing to get worse (pain, tightness, strength, energy, balance, cognitive area).

[huberc849]

It happens to me every MRI