If My MRI Is Stable, Why Is My Walking Getting Worse?

And for those of us with lots of brain and spinal lesions?

Thanks for sharing your doctor's feedback. I am also in that group with a heavy lesion load. It's helpful to hear a theory, even one that's not particularly comforting.

I also have stable brain lesions. For years and years. But my disability is getting a lot worse. I still walk, but only around my small apartment. I haven't been able to go anywhere without my scooter for years. Thanks for verifying what I always believed.

I'm exactly the same, my MRI does not show, new lesions, in my brain, but I'm always worse, or I have a new problem

Good article, not sure it helps, last MRI was unchanged, but was only for comparison to brain lesions. I am lucky I guess, RRMS diagnosed in 2014, still have full mobility, but the article makes you wonder about the future, not much I can do other than take the medication and smile, accept the symtoms I have and try not to worry.

It seems like they don/t really know about the connection between lesions abd MS disability I have been dealing with this since 2001 and still no answers,thanks for looking at this ED read your column always hoping for something Merlin Leine

Excellent article. I , too have a similar story with no new leasing but rapid progression over the last 5 years. Yes, MRI scans do not necessarily correlate with clinical outcomes!

It's been seven years since my last relapse so I've been lucky. Supposedly I am stable according to my brain MRI's (spinal done about every 5 years) but I definitely feel a very slow progression. I have asked the same question of my neuro regarding MRI's. Heard the same response. Wish they'd find a cure already. Waiting has been the hardest part. Our futures are one big question mark...Thanks for the article. I am not alone!

Hi Ed.Lisaann here. Interesting article with perfect timing. I'm going to a little mini group informational tonight titled "Understanding MRI & the Role in Diagnosis & Treatment". I always look forward to reading your articles.

My lesions are in my cervical area and my MRI has been unchanged for years. I'm now SPMS with my left leg weekness, foot drop and fatigue worsening.

I had a MRI (brain and spine) Jan 2017 the neurologist report said 'changes consistent with ms'. What does that really tell - nothing much that I already know.

Having faith in this moment I'm feeling strong to take care of my self hope soon a scientists will give us a good news.

Thank you.
For years , my brain scans have read , "consistent with ms. Little or no change." I have gone from just numbness, but fully functioning to needing help to stand and then walking up to 15 using a walker and a belt. I can't open, close my left hand nor raise my left arm. Still the radiologists' reports say no new or enhancing lesions.
Finally, one of my many ms specialists looked at the cervical spine MRI and explained that my brain was ok, but my spine was a mess.
I wish that I read this article as my leg and arm stopped working. I felt " crazy" for so long.

Thanks for the article. 27 yrs for me. Diagnosed at 20. SPMS stage. Copaxone for 17 yrs w no change to MRI in a about 15 yrs. Just took a huge step and switched to the new infusion of Ocrevus. First dose was yesterday...hoping I made the right decision.

This has always been my question and issue. All of my MRIs since diagnosis have pretty much been the same, but my walking has been getting worse over the last 11 years. I was told I had a lesion on my spine, but I've primarily only have had MRIs on my brain with no change. I guess this explains my experience.

I just got another MRI and no changes, but my doctor said; my MS seems to be real progressive, before seeing the MRI. The person that read it said; no changes. Yet my body seems to be shutting down. Vocal cord parilized about 2 years, intestines parilized on left side, already prolapsed so had some removed.motorized wheelchair ordered by my doctor.Why no changes on MRI, but I'm much worse?

Hi to all

I have a brother with MS and the doctor told us that his lesions have improved from the last MRI he had. His spinal cord was checked as well and all were normal and no lesions were found. I were wondering why my brother's MS is worsening. Any thoughts?

Have just received letter from neuro consultant with mri results. It says no changes from last years mri - this is reassuring. I too have been getting physically worse for many years and now have to use wheelchair when outdoors. What’s going on?

I just don’t get it! I’m physically worst but my MRI’s are stable. I just feel they should correspond but they don’t!

This is my exact case. Not sure how much longer I will be able to walk...can’t stop this thing. I appreciate hearing others that are experiencing the same.

Thanks for the informative article, Ed. Apologies in advance if this comment gets a bit lengthy, but there is quite a bit to explain about my situation. What I am really wondering is if my situation is really unusual, or if lots of folks are in the same predicament.

My situation: I've had only one "relapse" that was definitively MS-related ... I lost vision in my right eye due to optic neuritis in 1997 (I was 31 years old at the time). Eventually the eye recovered, but for 15 years I battled persistent fatigue and a very gradually increasing cognitive dysfunction (mostly difficulty in word-finding and multi-tasking). During this time, my MRIs showed absolutely no changes: the same 3 lesions were always present but no enhancing lesions ever appeared. Over the past 5 years or so, my right side has started noticeably weakening, but I am still mobile. For the past 2 years, my neurologist ordered MRIs with Neuroquant analysis (an automated measure of the volumes of various components of the brain). My hippocampal volume is in the 3rd percentile (down from 8th percentile last year). The ventricular volume (the fluid-filled empty part of brain) is at the 90th percentile. These 2 measures together suggest significant brain atrophy. I saw a MS specialist yesterday to try to make sense of all this. Here's what he told me:

Given the lack of discernible relapse/remit events over 15+ years and growing right-side weakness and cognitive decline, he would diagnose me with PPMS, if it were not for that initial bout of optic neuritis (whose very existence runs counter to a PPMS diagnosis). He could label one of the tiny new white spots that showed up on my MRI as evidence of ongoing demyelination and diagnose RRMS, ignoring the very real possibility that those tiny almost insignificant spots could just as easily be caused by migraines or simply by age. Or he could diagnose SPMS, except that usually SPMS patients have a history of relapse/remit events before transitioning into SSPM, clearly not representative of my history.

The reason all this is relevant is the diagnosis I get labeled with helps advise (and justify to medical insurance!) the appropriate treatment plan. He was asking for my input so that we could together make a go-forward plan. He indicated that he could literally make a case for any of the 3 diagnoses, and thus the quandary.

I've heard of being in "limbo" before getting an MS diagnosis. But I seem to be in a weird post-MS diagnosis limbo. (I was diagnosed with MS in 2012, but my neurologist never really seemed concerned to specify the subtype ... I took Copaxone for about 4 years until I just couldn't handle the painful injections any more). Am I alone in this post-MS-diagnosis limbo? If not, did your doc label the subtype of your MS and what treatment was recommended?

My wife was diagnosed with ms in 1979. We went to the Cleveland Clinic yesterday 10/17/2018. He checked all of her MRIs and checked her out and came back in with news we did not want to hear. She is on Ocevus and the lesions are all stable but the problem is the old lesions are starting to break down and she will start getting worse. More than likely she will end up in a wheelchair in the future because there is not a treatment to help with this ongoing problem. Not what we wanted to hear.

Thank you for an insightful article. I was 26 when dx'd in 2004 officially after over a year of elimination testing. I was sent to Mayo in Jacksonville, FL in August 2004 due to the rapid progression of my disease and extreme pain. At that time most doctors still didn't believe pain was associated with MS, Mayo dx'd me with Fibromyalgia in addition to MS as well. My lesions started in c-spine, lumbar was negative but evoked potentials was final test that confirmed MS. Was dx'd as RRMS, however never have had a remission since. I've lost vision in left eye, was totally blind for over 4 months in 2015. Will be starting Ocrevus Tuesday, my 7th DMD. I've had no luck so far with any medication, either hasn't helped progression or I've had extreme reactions to the medication. Would love to try Stem cell, feel maybe my only hope. As an MS activist I feel we have to keep fighting for those of us who are yet to be dx'd so they don't have to go through what we've faced. I'm in Oklahoma and we just don't have the specialists here that other states do. I appreciate everyone's stories and input!

My husband has been told he doesn't meet the criteria for ocrelizumab as his brain scans, a year apart, show no change. Although he had two full body scans, lesions on the spine weren't mentioned or looked at. His walking has definitely deteriorated over the past year. I'd like to know if it's usual for just the brain scans to be looked at when making a decision as to whether a patient can have the drug.

Just had my latest brain and spine mri which I cried after for staying still for 1.25hrs. Same results from 2 years ago but my problems are worse than a few years ago. I cannot walk very far or do daily things like shower every day. What is going on?

I have been scouring the Internet for answers. I was diagnosed with RRMS in 2011. I went all the way till July 18th with little to no problems. I got. Series of UTI’s (one of which would not respond to antibiotics and it took 3 different antibiotics to finally go away. I was progressively getting weaker and fatigued over the weeks. Finally, when I went to work I couldn’t walk well at all, extremely weak, and all cognitive functions were bad, new onset of speech delay and head tremor came. Everything was way worse than the 1st relapse and then there were the new things. On MRI there are no new lesions in the brain or spinal cord. After almost two months I am still trying to not delay in speech or tremor. I am getting better, just very slowly. This is what confuses AND angers me. The neurologists are calling this a nasty pseudo relapse because there is no new lesions or active lesions on my MRI’s, but I show all the signs of active and new disease; however, short term memory was severely impacted, processing severely impacted, problem solving severely impacted, new symptom of speech was and still does delay (overstimulation now causes it when it would be present regardless), new symptom of torso and head tremor present, new symptom of not feeling when I needed to urinate. All worsening of old symptoms and new symptoms, but this is a pseudo exacerbation two months later that I am going to PT, speech, and pelvic floor therapy for and I am still out on STD????? None of that makes sense to me and I am tired of talking to the neurologists about it and watching them look confused is completely frustrating. Can you have a relapse and not have new disease on MRI????