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

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

MS_Wire_Ed_Tobias
During a routine exam with my neurologist recently, I asked her a question I’d never thought to ask before: “Why do you order regular MRIs of my brain, but not of my spine?”

Interestingly, within a few days of my exam, a Harvard Med School study was released that addressed a similar question: Is there always a link between the level of physical disability in some MS patients and the amount of lesions in the brain?

What my doctor said

My neurologist’s answer was pretty simple. Disease progression in parts of the body that are controlled by nerves along the spinal cord, such as the legs, is usually noticed by a patient physically before the progression can be seen on a spinal MRI. On the other hand, MS disease progression can be spotted on an MRI of the brain before it’s noticed physically. So, by regularly doing brain scans, a neurologist may be able to halt that progression by changing DMDs, for example, before it has a chance to have a physical impact. Doing a spinal scan doesn’t present the same opportunity.

The Harvard Med School study

Details of the Harvard Medical School study are reported in an article written for Multiple Sclerosis News Today by Jose Marques Lopes, PhD. The conclusion of this study is that, for some MS patients, there may be no connection between the number and size of the lesions that can be seen on an MRI of the brain and that patient’s level of physical disability.

The research found that a little over 13 percent of the patients who were studied had this “dissociation” between what the scan revealed and their disability level. Some had only a few brain lesions but lots of disability. Others had a lot of brain lesions but relatively little physical disability.

According to the researchers, patients in the low brain lesion but high disability group were prone to having a progressive form of MS, more cervical spinal cord lesions, and a lower physical quality of life. The study’s authors believe this may be due to their lesions being concentrated in the spinal cord rather than in the brain, and that’s pretty much what my neuro told me about my MS.

What about MS patients with the opposite — when their MRIs show a lot of brain lesions but they exhibit few physical symptoms? The Harvard researchers suspect these patients may be likely to have cognitive problems.

Bottom line

For the study: The researchers believe that this disparity between observable symptoms and MRI results complicates a neurologist’s ability to determine a prognosis for MRI patients.

For me: The study results, combined with what my neurologist told me the other day, explain why being told for many years that “the MRI looks great” was only half of my MS story.

(You’re invited to follow my personal blog at www.themswire.com)

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

49 comments

  1. 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.

    • Ed Tobias says:

      Hi Lisa,

      I’m glad that you thought the information was helpful. I, too, would rather read something that helps me understand a little more about this disease, even if it’s not always comforting or encouraging. I want to know what’s going on.

      Ed

      • Stacy H. says:

        I agree with you Ed Tobias!

        Living with SPMS (dx’d 1985 RRMS) – my biggest MS gripe would have to be my cognitive melt-downs — which are further amplified by the least bit of stress, i. e., packing a small suitcase for a WEEKEND trip. Ridiculous, I know. And then of course – I have the almost usual symptoms of major fatigue, R. Foot drop, not being able to stand very long or walk very far, mild bladder stuff, worsening hand writing, on and on.
        My walking distances as well as the amount of time I can actually stand – have been dramatically reduced since dx’d with SPMS 7 yrs ago – even though 6 annual MRI’s have shown no new dz activity or progression, and all seem pleased (dr’s and me) with the DMD I am taking, GILENYA.

        In the article – what I found most interesting and affirming – was that those with the most brain lesions seemed to have more cognitive difficulties vs. those with the most brain lesions in their spinal cord/brain stem – having the most physical difficulties.

        On an MRI – my brain lesions are so vast, that it reminds me of a crime scene reenactment on any version of Law & Order – where they replicate the blood spatter on a wall. So even learning this wee bit of information is absolute VALIDATION for me. 😀👊🏻

  2. Kym says:

    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.

    • Ed Tobias says:

      Hi Kym,

      It sounds as if our progression has been similar, though I think I’m a but more mobile than you. I’m glad that you found what I wrote was useful.

      Ed

    • Robyn says:

      I am in the same position. My neurologist is always so happy to report “no new lesions” and doesn’t ever want to address my decline! Very frustrating!!
      Years ago I had a doctor report to me that I looked “a whole lot better than my scan”, meaning she expected to see me with more disability.

  3. Jaz says:

    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.

    • Ed Tobias says:

      Hi Jaz,

      I was fully mobile for many years after my DX before slowing down. But when I was DXed in 1980 there were no Disease Modifying Drugs. So, you have a better chance than I had of kicking MS in the teeth. Best of luck and stay positive.

      Ed

    • Anne Seibright says:

      You can do something. You could have HSCT. With an EDSS which appears as low as yours & such a short period of time since diagnosis & is still RRMS, HSCT could halt disease progression & improve some symptoms. It’s certainly worth you researching…..I have followed hundreds of people with your level of disability/ time since diagnosis…..95% success rate. google HSCT for MS.

  4. merlin says:

    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

    • Ed Tobias says:

      Thanks, Merlin. I try to write from the perspective of a journalist who also happens to have MS. I’m really pleased that you find my stuff useful.

      Ed

  5. Julie says:

    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!

    • Tim Bossie says:

      You are definitely not alone Julie! Keep asking questions, keep pushing for what you feel you need. And keep hoping for that cure soon. 🙂

    • Ed Tobias says:

      Hi Julie,

      Thanks for your comments. We’re all traveling the same river even though our boats may be different. The more we know about how to navigate these waters the better we all are, so let’s keep sharing our experiences.

      Ed

  6. Lisaann Czarnowski says:

    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.

    • Ed Tobias says:

      Hi Lisaann,

      Always good to hear from you and I’m glad to hear the timing was so good. MRIs can certainly be puzzling, (I should speak with my cousin the radiologist about them someday), so your session tonight should be interesting.

      Ed

  7. Mary Terese says:

    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.

    • Marshal says:

      I’ve never had a cervical MRI. I was DX with RR MS in the early 90s. My walking got worse, foot drops worse at times. and way worse fatigue. My neuro. Dr. Retired I can’t find a new ms Dr. To take this seriously. I have trouble talking to them be cause of my cognitive issues. How can I improve my abilities to communicate.I think they think I’m nuts. I not nuts I just can’t explain this so they can understand. Didn’t think my neuro. Dr. retiring would be so complicated. Any ideals would be a god send. I’m at my ropes end. Ty Terry

      • Ed Tobias says:

        Hi Terry,

        Have you tried taking a family member along with you to try to help you communicate with your doctor? Or, try writing down the things that you want to communicate to the doc.

        ed

  8. Katie says:

    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.

    • Ed Tobias says:

      Hi Katie,

      I think that report may have been written by a radiologist and not by your neurologist. I’d suggest you ask your neurologist to review the actual scan with you and show you, or at least tell you, specifically what’s on the images.

      Ed

  9. Lisa says:

    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.

  10. Suzanne Branch says:

    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.

  11. Kathy says:

    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.

    • Ed Tobias says:

      Hi Kathy,

      I’m glad that what I wrote was useful. I’ve read a lot of hopeful things about Ocrevus. I have similar mixed feelings about having switched to Lemtrada, but the positives seem to outweigh the negatives for both.

      Best of luck,

      Ed

  12. Shiryl Dean says:

    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.

  13. Valerie DeAngelis says:

    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?

    • Ed Tobias says:

      Hi Valerie,

      I’m sorry that your MS is as bad as it’s become.

      As I wrote in my column some lesions, which create the problems that cause many of the symptoms, can be hidden on MRIs. Also, if the MRI is only done on one part of the body, for example the brain, you won’t see problems caused by lesions along the spinal cord.

      I wish you the best.

      Ed

  14. Dale says:

    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?

    • Ed Tobias says:

      I’ve been told, as I mentioned in my column, that some lesions can result in symptoms before they’re visible on an MRI. Perhaps this is the case with your brother.

      Ed

  15. Eileen P says:

    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?

  16. Melissa says:

    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!

    • Ed Tobias says:

      Hi Melissa,

      That’s exactly what I wrote about. MRIs don’t show everything. You can have symptoms that are caused by something going on in the spine and it might not appear on a spinal MRI. Also, your brain MRI wouldn’t show something that was going on elsewhere in the central nervous system.

      Ed

  17. Tonya says:

    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.

    • Ed Tobias says:

      Hi Tonya,

      I’m sorry to hear about your walking problems. Hopefully, your neurologist will be able to get you on a treatment that will stop any more deterioration.

      Ed

  18. 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?

    • Ed Tobias says:

      Hi Pamela,

      I’m sorry for the delayed response. I saw your comments while I was taking a week away from writing and the internet and writing and then I forgot that I’d read them. Anyway…

      My feeling, and that of my neuro, is that it doesn’t really matter what diagnosis name is given to your MS. It is what it is. I haven’t had a relapse (exacerbation) since, I’d guess, the 1990s. But my symptoms have gradually worsened. So, you’d think I’d be listed as PPMS but, on the records, I’m probably still RRMS.

      As you say, your insurance coverage may depend on whether you’re RRMS, SPMS, etc. Many disease modifying drugs are approved to treat RRMS but not SPMS so, insurance-wise, you’ll probably have a greater choice of DMDs if you’re still considered as an RRMS patient.

      Bottom line…if I were you I wouldn’t worry about what your sub-type is. Let it be whatever will get you the treatment your and your neuro decide is best with the least hassle about coverage.

      Ed

  19. L Kelley says:

    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.

    • Ed Tobias says:

      I’m so sorry to hear that.

      I understand that many people have had success with Ocrevus halting their progression and a smaller number have had some symptoms improve. The same seems to be true for Lemtrada, a similar treatment.

      The Cleveland Clinic as an excellent reputation as an MS center, but every MS patient travels a unique course. I hope your wife will find a treatment that will, at least, stop her progression.

      Ed

    • Kristen Buchanan says:

      Your wife needs to join the MSGym on Facebook! Over 10,000 of us “msgymmers” from all over the world. Trevor Wicken is dedicated to improving our quality of life through movement using the principles of neuroplasticity. The FB page is free with daily exercises, but she needs to join the members community and have access to programs that are tailored to all of us with different levels of disability. The best thing she can do is move and keep moving ( properly of course). Information is invaluable and even better the membership is inexpensive. Good Luck!

  20. Jenifer says:

    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!

    • Ed Tobias says:

      Hi Jenifer,

      Thanks for taking the time to send a comment.

      I’m sorry that you’ve had such a tough time of it. I’ve heard some very good things about Ocrevus, however, and I hope that you do well on it. I’ve been fortunate in having had very slow progression over the past 38 years. I’ve been treated with 4 DMTs and I think that each has helped me. I’m currently ten months post round 2 of Lemtrada. If you look through other MS Wire columns that I’ve written you can find out a lot more about how my MS has behaved.

      Best of luck to you,

      Ed

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