Facts About MS You Might Not Know and Should

Living with Multiple Sclerosis (MS) can be a daunting experience. I have found that it is made so much worse by the negative misconceptions and assumptions surrounding the disease. In this post, we'll delve into some key facts about MS to empower your journey and reduce your fears about the disease. Then we’ll conclude with an exercise to change the negative beliefs you might have had regarding MS.

In particular, we’ll explore the questions “How progressive is MS?” and “How important are MRIs in understanding your progression?” Along the way we’ll debunk some common myths that might not be serving your healing!

At a Glance:

So, how progressive is MS? MS is far less progressive than what most people think. A whopping 60% won’t require a walking device and/or will only experience episodes of symptoms.  This percentages are even more favorable if we only look at those initially diagnosed with relapsing-remitting forms of MS.

And how important are MRIs? They are not indicative of the number or gravity of your symptoms or progression. They are a physician’s main tool to test for MS, but they are not as revealing of the progression of the disease as you might initially believe.

How Progressive is MS?

One of the misconceptions regarding MS that I find [MF1] detrimental and disheartening relates to disease progression. Some time back, I had a client who had been slowly recovering her energy, decreasing her nightly trips to the restroom, and feeling less pain in her feet. Then her improvements declined following a terrible bout of pneumonia. It took her several months and lots of patience to regain what she had achieved. When it first happened, however, I asked her about how she was taking the setback, and she commented, “Well, you know, Eva, MS is a progressive disease. It’s only going to get worse!” She fully assumed that she would not recover from this setback. Fortunately, that was not the case.

Has this happened to you? Has the flu, or a vaccine, or even an argument or intense stressor increased your symptoms, and you began to think, “Oh, no, my MS is progressing!!!”

So, let's look at the facts about how progressive your MS really is.

The Facts About MS Progression

Most people view MS as a “relentlessly progressive, inevitably disabling disease” [1]. A study conducted in 2016 [2] showed this view is incomplete at best and wholly inaccurate at worst. In fact, the medical evidence shows MS is less threatening and less rapidly debilitating than is commonly recognized by the general population, by those diagnosed with MS, and even by physicians specializing in MS care [3]!

So what does the data tell us?

MS % Progression

Understanding the Statistics

Examining the facts regarding MS progression, it becomes evident that not all people with MS will experience progressive debilitation. What’s more, the majority will not experience significant progression at all. Contrary to the belief in an inevitable decline, research indicates that up to 30% of people diagnosed with MS do not experience any progression whatsoever, while another 30% experience some progression but will not require assistance such as a cane or wheelchair [1]. These figures were documented more than 20 years ago. The rates of progression have slowed substantially since then with the advent of disease-modifying therapies [4], and people with the relapsing-remitting form of MS (RRMS), which makes up 85% of people with MS, have even lower rates of progression!

But these facts are not commonly known and I find that many people with RRMS experience their disease as a sort of “ticking time bomb.” There’s a nerve-wracking belief that at some point in the near future their symptoms will progress and they’ll end up in a wheelchair. Have you experienced that feeling of dread?

% of people with RRMS who progress

The fear of inevitable progression is a common concern among those with RRMS [5] so if this describes you, you are not alone. However, research shows that 50% of people initially diagnosed with relapsing-remitting MS will continue to experience only relapses and remissions, challenging the misconception that the majority of those diagnosed with MS will inevitably progress [1].

Interestingly enough, this same research also pinpointed some factors that could affect progression that you might want to consider:

The likelihood of transitioning to secondary progressive MS seems to include being older, disease duration, amount of disability, and number of relapses in the previous year [1]. On a positive note, this study also found that experiencing improvements in disability in the last year can actually reduce the probability of developing secondary progressive MS!

The Power of Perception: Nocebo Effect

Why is it important to watch your beliefs regarding MS progression?

Your beliefs and attitudes towards MS can significantly impact your healing. Some time ago, I had a client who had been working with me for several months and was beginning to stand more and even wash her own hair. She was excited about the improvements and asked her neurologist if he thought that she might be able to continue recovering. Unfortunately, he answered back something along the lines of, “Of course not. This is a progressive disease. Your improvements are only temporary.” The day after her doctor’s appointment, she found that she couldn’t even get out of her bed without assistance. She immediately called me, and we did a quick session on the spot to cancel his nocebo effect.

What is the nocebo effect? It is the opposite of the placebo effect. While the placebo effect produces benefits without a known active agent (getting better after taking a sugar pill you believe will make you better), the nocebo effect produces harm and symptom worsening based only on the belief you are getting worse [6].

These negative effects are most commonly found among people with higher anxiety or psychological distress, or who have a history of medically unexplained symptoms [7], all of which are common in people diagnosed with MS [8]. Anxiety regarding disease progression may increase disability even in the absence of other contributing factors [9]. This underscores the importance of addressing misconceptions about MS progression, and the importance of having a more proactive and well-informed neurologist [10]!

How Important are MRI’s in Determining MS Progression?

Another source of anxiety and fear of progression is tied to magnetic resonance imaging (MRI) scans. These fears seem to be fueled by the assumption that MRI results are directly correlated with disease progression. They are not.

MRIs are used to diagnose MS [11] and to monitor its progression [12]. The brain lesions the scans identify are typically thought to represent areas of inflammation and demyelination, or damage to the structure and function of brain cells, so it makes sense to think more lesions or bigger lesions indicate bigger problems.

The problem is that the scans represent a snapshot, a single moment in time. In MS, lesions appear and disappear, changing in size and intensity, all the time, reflecting an ongoing process of inflammation and repair [13]. This has been recognized since we first began to capture images of MS lesions [14,15].

The images below come from compelling set of case studies from 2007 in which the researchers did MRI scans every 1-4 weeks for a group a people with MS [16]. These specific images below were collected from a 38 year old man with RRMS. They show the dramatic changes in lesion sizes and counts over the course of a year. What’s amazing about them is that, though his brain looks like its lighting up in lesions, he experienced absolutely no changes in symptoms. These findings clearly show that changes in MRIs do not indicate changes in disease or symptom severity.

2007 Study MRI Lesion Changes in MS

Note, this animation of the images comes from a later news release on the original articles [17].

New lesions detected in MRI scans are not necessarily connected with the new symptoms or with disease progression [18]. MRI findings by themselves do not predict disability either at the time of measurement or in the future [19-21]. An analysis of lesions during the first 3 years following diagnosis do not predict the severe disability at 16 years following diagnosis [22]. Only the analyses of specific types of lesions, using more advanced imaging and combined with other non-lesion measures, could have some predictive ability for later progression [23,24].

The appearance of a lesion on an MRI scan cannot tell you what’s going on inside that area. It could represent inflammation, axon loss, or demyelination, or it could represent remyelination and repair [25]! Contrary to what might seem logical, larger lesions are more likely to repair themselves and disappear, while smaller lesions that last a long time without repair are more associated with disability [18]. But even the little ones commonly undergo repair and remyelination. Lesion repair and remyelination regularly happens even in people with advanced disease, extensive lesions, a of long duration [26].

This challenges the notion that MRI findings will determine the status of your disease nor inherently forecast disease progression.

What do new MRI lesions Predict?

One way new brain lesions develop is through psychological stress. Psychological stress can produce oxidative stress in the body [27]. This oxidative stress damage is strongly present in brain lesions in people with MS [28].

A study published in 2012 taught people with MS to manage their stress and found that doing so dramatically reduced the number of existing and new brain lesions [29].

“This is the first time counseling or psychotherapy has been shown to affect the development of new brain lesions,” said David Mohr, PhD, principal investigator of the study [30].

A companion study tracked the different kinds of stress the participants experienced over the course of a year. This second study found that people who experienced major stress showed much higher risk of developing new lesions [31]. In conclusion, the first study shows reducing stress reduces lesions, and the second shows that increasing stress increases lesions.

Stress can cause lesions!!

Next Steps

Rethinking the common assumptions surrounding MS, especially regarding progression, is crucial for fostering a more positive and as well as accurate understanding of the condition. By acknowledging that MS progression is extremely variable and more optimal that we assume, rebuffing MRI-related anxieties, and recognizing the influence of your belief and stressors on health, you can gain a more empowered outlook on what your future holds. 

What more can you do? For one, you can use hypnosis and neurolinguistic programming (NLP) to move away from the nocibo effect and towards a more positive outlook of your future. This one change could actually benefit your health. One exercise I often recommend to change those negative perceptions regarding your MS is called the NLP Swish Process [32,33].  

NLP Swish Process for a More Positive Outlook on Your MS Journey

If you’d love to learn more ways to take control of your healing, sign up for my newsletter or consider scheduling a free consultation to see if medical hypnotherapy is a good fit for you.

References Used in the Post

1.         Rolak, L. A. (2003). Multiple sclerosis: It’s not the disease you thought it was. Clinical Medicine & Research, 1(1), 57-60. https://doi.org/10.3121/cmr.1.1.57

2.         Dennison, L., McCloy Smith, E., Bradbury, K., & Galea, I. (2016). How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PLoS ONE, 11(7), Article e0158982. https://doi.org/10.1371/journal.pone.0158982

3.         Heesen, C., Kleiter, I., Nguyen, F., Schäffler, N., Kasper, J., Köpke, S., & Gaissmaier, W. (2010). Risk perception in natalizumab-treated multiple sclerosis patients and their neurologists. Multiple Sclerosis Journal, 16(12), 1507-1512. https://doi.org/10.1177/1352458510379819

4.         Koch-Henriksen, N., & Magyari, M. (2021). Apparent changes in the epidemiology and severity of multiple sclerosis. Nature Reviews Neurology, 17(11), 676-688. https://doi.org/10.1038/s41582-021-00556-y

5.         Janssens, A. C. J., van Doorn, P. A., de Boer, J. B., van der Meché, F. G., Passchier, J., & Hintzen, R. Q. (2004). Perception of prognostic risk in patients with multiple sclerosis: the relationship with anxiety, depression, and disease-related distress. Journal of Clinical Epidemiology, 57(2), 180-186. https://doi.org/10.1016/S0895-4356(03)00260-9

6.         Kennedy, W. P. (1961). The nocebo reaction. Medical World, 95, 203-205.

7.         Colloca, L., & Barsky, A. J. (2020). Placebo and nocebo effects. New England Journal of Medicine, 382(6), 554-561. https://doi.org/10.1056/NEJMra1907805

8.         Hoang, H., Laursen, B., Stenager, E. N., & Stenager, E. (2016). Psychiatric co-morbidity in multiple sclerosis: The risk of depression and anxiety before and after MS diagnosis. Multiple Sclerosis Journal, 22(3), 347-353. https://doi.org/10.1177/1352458515588973

9.         Hanna, M., & Strober, L. B. (2020). Anxiety and depression in Multiple Sclerosis (MS): Antecedents, consequences, and differential impact on well-being and quality of life. Multiple Sclerosis and Related Disorders, 44, Article 102261. https://doi.org/10.1016/j.msard.2020.102261

10.       Häuser, W., Hansen, E., & Enck, P. (2012). Nocebo phenomena in medicine: Their relevance in everyday clinical practice. Deutsches Ärzteblatt International, 109(26), 459-465. https://doi.org/10.3238/arztebl.2012.0459

11.       Thompson, A. J., Banwell, B. L., Barkhof, F., Carroll, W. M., Coetzee, T., Comi, G., Correale, J., Fazekas, F., Filippi, M., & Freedman, M. S. (2018). Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. The Lancet Neurology, 17(2), 162-173. https://doi.org/10.1016/S1474-4422(17)30470-2

12.       NMSS. (2024). Magnetic resonance imaging (MRI) for diagnosing multiple sclerosis. National Multiple Sclerosis Society. https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools/MRI

13.       Rovira, A., Auger, C., & Alonso, J. (2013). Magnetic resonance monitoring of lesion evolution in multiple sclerosis. Therapeutic Advances in Neurological Disorders, 6(5), 298-310. https://doi.org/10.1177/1756285613484079

14.       Périer, O., & Grégoire, A. (1965). Electron microscopic features of multiple sclerosis lesions. Brain, 88(5), 937-952. https://doi.org/10.1093/brain/88.5.937

15.       Prineas, J. W., & Connell, F. (1979). Remyelination in multiple sclerosis. Annals of Neurology, 5(1), 22-31. https://doi.org/10.1002/ana.410050105

16.       Meier, D. S., Weiner, H. L., & Guttmann, C. R. G. (2007). Time-series modeling of multiple sclerosis disease activity: A promising window on disease progression and repair potential? Neurotherapeutics, 4(3), 485-498. https://doi.org/10.1016/j.nurt.2007.05.008

17.       Chen, I. (2012). More than meets the eye: The promises and pitfalls of MRI imaging in multiple sclerosis. Multiple Sclerosis Discovery Forum. http://www.msdiscovery.org/news/news_synthesis/322-more-meets-eye

18.       Meier, D. S., Weiner, H. L., & Guttmann, C. R. G. (2007). MR imaging intensity modeling of damage and repair in multiple sclerosis: Relationship of short-term lesion recovery to progression and disability. AJNR. American journal of neuroradiology, 28(10), 1956-1963. https://doi.org/ 10.3174/ajnr.A0701

19.       Koch-Henriksen, N. (2009). No shortcuts to outcome in MS clinical trials? Neurology, 72(8), 686-687. https://doi.org/10.1212/01.wnl.0000343734.33226.f1

20.       Daumer, M., Neuhaus, A., Morrissey, S., Hintzen, R., & Ebers, G. C. (2009). MRI as an outcome in multiple sclerosis clinical trials. Neurology, 72(8), 705-711. https://doi.org/10.1212/01.wnl.0000336916.38629.43

21.       Ebers, G. C. (2010). Commentary: outcome measures were flawed. Bmj, 340. https://doi.org/10.1136/bmj.c2693

22.       Goodin, D. S., Traboulsee, A., Knappertz, V., Reder, A. T., Li, D., Langdon, D., Wolf, C., Beckmann, K., Konieczny, A., & Ebers, G. C. (2012). Relationship between early clinical characteristics and long term disability outcomes: 16 year cohort study (follow-up) of the pivotal interferon β-1b trial in multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry, 83(3), 282-287. https://doi.org/10.1136/jnnp-2011-301178

23.       Genovese, A. V., Hagemeier, J., Bergsland, N., Jakimovski, D., Dwyer, M. G., Ramasamy, D. P., Lizarraga, A. A., Hojnacki, D., Kolb, C., & Weinstock-Guttman, B. (2019). Atrophied brain T2 lesion volume at MRI is associated with disability progression and conversion to secondary progressive multiple sclerosis. Radiology, 293(2), 424-433. https://doi.org/10.1148/radiol.2019190306

24.       Brownlee, W. J., Altmann, D. R., Prados, F., Miszkiel, K. A., Eshaghi, A., Gandini Wheeler-Kingshott, C. A., Barkhof, F., & Ciccarelli, O. (2019). Early imaging predictors of long-term outcomes in relapse-onset multiple sclerosis. Brain, 142(8), 2276-2287. https://doi.org/10.1093/brain/awz156

25.       Neema, M., Stankiewicz, J., Arora, A., Guss, Z. D., & Bakshi, R. (2007). MRI in multiple sclerosis: What’s inside the toolbox? Neurotherapeutics, 4(4), 602-617. https://doi.org/10.1016/j.nurt.2007.08.001

26.       Patani, R., Balaratnam, M., Vora, A., & Reynolds, R. (2007). Remyelination can be extensive in multiple sclerosis despite a long disease course. Neuropathology and applied neurobiology, 33(3), 277-287. https://doi.org/10.1111/j.1365-2990.2007.00805.x

27.       Aschbacher, K., O’Donovan, A., Wolkowitz, O. M., Dhabhar, F. S., Su, Y., & Epel, E. (2013). Good stress, bad stress and oxidative stress: Insights from anticipatory cortisol reactivity. Psychoneuroendocrinology, 38(9), 1698-1708. https://doi.org/10.1016/j.psyneuen.2013.02.004

28.       Haider, L., Fischer, M. T., Frischer, J. M., Bauer, J., Höftberger, R., Botond, G., Esterbauer, H., Binder, C. J., Witztum, J. L., & Lassmann, H. (2011). Oxidative damage in multiple sclerosis lesions. Brain, 134(7), 1914-1924. https://doi.org/10.1093/brain/awr128

29.       Mohr, D. C., Lovera, J., Brown, T., Cohen, B., Neylan, T., Henry, R., Siddique, J., Jin, L., Daikh, D., & Pelletier, D. (2012). A randomized trial of stress management for the prevention of new brain lesions in MS. Neurology, 79(5), 412-419. https://doi.org/10.1212/WNL.0b013e3182616ff9

30.       Paul, M. (2012). Stress reduction therapy prevents M.S. brain lesions. Northwestern Medicine News Center. https://news.feinberg.northwestern.edu/2012/07/11/stress_reduction_prevents_ms/

31.       Burns, M. N., Nawacki, E., Kwasny, M. J., Pelletier, D., & Mohr, D. C. (2014). Do positive or negative stressful events predict the development of new brain lesions in people with multiple sclerosis? Psychological Medicine, 44(2), 349-359. https://doi.org/10.1017/S0033291713000755

32.       Masters, B. J., Rawlins, M. E., Rawlins, L. D., & Weidner, J. (1991). The NLP swish pattern: An innovative visualizing technique. Journal of Mental Health Counseling, 13(1), 79-90.

33.       Short, F., & Thomas, P. (2015). Core approaches in counselling and psychotherapy. Routledge.

34.       Bandler, R., Andreas, S., & Andreas, C. (1985). Using your brain—for a CHANGE: Neuro-linguistic programming. Real People Press.

Post coauthored by Eva M Clark, MSc, and Michelle Fauver, PhD

{"email":"Email address invalid","url":"Website address invalid","required":"Required field missing"}