Nurse Kimberly Asks...
In multiple sclerosis, the immune system attacks the central nervous system, leaving lesions, or scars. In fact, multiple sclerosis literally means “many scars.”1 The number of lesions you have does not necessarily indicate how severe your symptoms will be.2-4 However, the location of the lesions can affect which symptoms you experience.5 You can also have lesions without symptoms and these can be an indicator of disease activity as well. Regardless of whether or not you are experiencing symptoms, it’s important to treat and monitor MS.6,7 And if you think you might be having a relapse, get in touch with your healthcare provider.6,7 What experience have you had with lesions and disease activity?
The role of lesions in disability progression
October 29, 2018
I started on this journey with only one visible lesion. I was told it was rare that multiple sclerosis would present itself in the spot where they found mine, in my lower spine.8
As the years progressed, this same lesion (or scar) seemed to cause me the most trouble out of any of the other ones that I eventually acquired.5 The most important thing that I have learned, with each new exacerbation, is the timing. The sooner I was able to accept that I was having an exacerbation, the sooner I could call my doctor, the sooner I was able to receive the treatment I needed.6
I know all too well the internal battle that goes on when you come to grips that it’s time to call the doctor. When you recognize that you are symptomatic of a new flare-up, it is important to note: timing is crucial.6,7
Yes. It may be bad timing, with all the activities you have planned on your calendar. However, if you decide to postpone calling your doctor because it’s just too inconvenient a time for you, it could potentially cause a small scar to develop into a larger, thicker scar.6 Please, think about that for a moment. By waiting to call the doctor, you could be creating much more of an inconvenience in the long run.4 The progression of the disease may be determined by how quickly you make that call, or don’t.4
I became more aware of this topic each time I progressed from flare to flare. As I asked questions, the biggest advice given to me was that I needed to pay attention to my symptoms, and keep track of how long new symptoms lasted. This is the key that will help you know when it’s time to act.6
My goal was, and is, to stay functioning as long as possible. My suggestion for you is to research this topic for yourself. You will find many sources that stress the importance of keeping any new lesions from forming and quickly addressing any signs of new ones.6,9
The role of lesions in disability progression
October 29, 2018
My doctor explained multiple sclerosis lesions to me as scars on my central nervous system. He said these scars were caused by my immune system attacking and damaging the protective covering on my nerves, which is called myelin. Unfortunately, this damage may be permanent.1,10,11
I have found that I usually experience a lot of the same symptoms due to the location of my lesions.5 I have a number of lesions on my brain that directly relate to my left arm and leg. Whenever I am tired, hot, or stressed, I can feel my left side getting heavy and weak with some numbness. If I think I’m having a relapse, my healthcare team will take these symptoms into account, as well as any other “clinical findings,” and sometimes suggest that I get an MRI. This all helps my doctors and I get the full picture of how I’m doing.
I also have times when my MS seems “silent,” when I’m not having any relapses, and it doesn’t appear that there’s any disease activity. I think that’s partly because I’m on a medication that has been effective for me. But my MS symptoms, particularly the ones related to my lesions, never totally go away. It is a lifelong condition, after all. The direct effect of lesions on your symptoms and disease progression can be confusing. I’ve researched the area quite a bit and I still don’t fully understand it. So don’t be afraid to talk to your healthcare provider if you want to learn more. You can even ask to view your MRIs and go over them together. It’s important to know what’s going on in your
Nurse Kimberly Sums It Up
Lesions are typically found and monitored using an MRI scan.15 If you think you’re experiencing a relapse, it is possible that you have a new lesion, and you should see your healthcare provider to determine what is happening and how you should treat it.6,16 Knowing the location of your lesions can also help you determine what symptoms you may experience.5 Having this knowledge can help you prepare and treat for the future.
References: 1. Multiple Sclerosis: Current status and strategies for the future, Janet E. Joy and Richard B. Johnston, Jr., eds. Washington, DC: National Academy Press, 2001:1-457. 2. Ntranos A, Lublin F. Diagnostic criteria, classification and treatment goals in multiple sclerosis: The chronicles of time and space. Curr Neurol Neurosci Rep. 2016;16(90):1-8. 3. Hunter SF. Overview and Diagnosis of Multiple Sclerosis. Am J Manag Care. 2016;22(6):S141-S150. 4. Rovira A, Auger C, Alonso J. Magnetic resonance monitoring of lesion evolution in multiple sclerosis. Ther Adv Neurol Disord. 2013;6(5):298-310. 5. Waubant E. Improving outcomes in multiple sclerosis through early diagnosis and effective management. Prim Care Companion CNS Disord. 2012;14(5): PCC.11016co2cc. 6. Giovannoni G, Butzkueven H, Dhib-Jalbut S, et al. Brain health: time matters in multiple sclerosis. Mult Scler Relat Disord. 2016;9(Suppl 1):S5-S48. 7. Multiple Sclerosis Coalition. The use of disease-modifying therapies in multiple sclerosis: principles and current evidence. http://www.nationalmssociety.org/getmedia/5ca284d3-fc7c-b005-ab537d495c3c/DMT_Consensus_MS_Coalition_color. Accessed May 21, 2018. 8. Kaunzner UW, Gauthier SA. MRI in the assessment and monitoring of multiple sclerosis: an update on best practice. Ther Adv Neurol Disord. 2017;10(6)247-261. 9. Rae-Grant A, Day GS, Marrie RA, et al. American Academy of Neurology. Practice guideline: Disease-modifying therapies for adults with multiple sclerosis. March 6, 2018. Available online at: https://download.lww.com/wolterskluwer_vitalstream_com/PermaLink/WNL/A/WNL_2018_04_19_RA EGRANT_NEUROLOGY2017835181R1_SDC3.pdf. Accessed May 21, 2018. 10. National Multiple Sclerosis Society. What is myelin? https://www.nationalmssociety.org/What-is- MS/Definition-of-MS/Myelin. Accessed May 21, 2018. 11. National Multiple Sclerosis Society. What is an immune-mediated disease? https://www.nationalmssociety.org/What-is-MS/Definition-of-MS/Immune-mediated-disease. Accessed May 21, 2018. 12. Simon J. MRI outcomes in the diagnosis and disease course of multiple sclerosis. In: Handbook of Clinical Neurology, Vol. 122 (3rd series): Multiple Sclerosis and Related Disorders, D.S. Goodin, ed. Elsevier B.V.;2014:chap 18:405-425. 13. National Institutes of Health. National Institute of Neurological Disorders and Stroke. Multiple sclerosis: hope through research. 2017. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Multiple-Sclerosis-Hope-Through-Research. Accessed April 18, 2018. 14. Kister I, Bacon TE, Chamot E, et al. Natural history of multiple sclerosis symptoms. Int J MS Care. 2013;15:146-158. 15. National Multiple Sclerosis Society. Magnetic resonance imaging (MRI). https://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools/MRI. Accessed May 21, 2018. 16. Traboulsee A, Simon JH, Stone L, et al. Revised recommendations of the Consortium of MS Centers task force for a standardized MRI protocol and clinical guidelines for the diagnosis and follow-up of multiple sclerosis. AJNR Am J Neuroradiol. 2016;37(3):394-401.