How to deal with Fear of New Lesions
I was recently diagnosed with MS about 3 months ago. Within that time, I went to have a typical number of lesions to quite a few. My neurologist refered me to a MS specialist due to the quick accumulation of lesions over such a short period of time. At this point they wanted me to switch from Tecfidera to Kisempta. However, I have to get all my vaccines (that I lost my immunity to over the course of my life, which includes a 4 week waiting period after I finish my last vaccine ) before I can start my new treatment. I am experiencing new symptoms during this time (which my doctors is trying to treat with steroids in the interim). I have about 5 weeks to go to start my new treatment. I’m honestly scared about the impact this waiting period has on my body. Every step I take, it seems like there is a new hurdle to overcome in this short period. I’m 29 and I am worried for my future. I wonder how much this disease will take over my life."
Hi Mellow - Miss.
Sorry to hear of what your going through right now. Myself I was diagnosed 4 months ago and about to have my next MRI and blood tests, these are the first lot since my diagnosis so I'm a worried to know if I have any more lesions.
I feel all we do is worry about our MS, MS symptoms, relapses, treatments and I'm sure there's more. But being able to come this forum has help me, reading people's posts and being able to reflect has helped. So please continue to read and be strong.
While I'm sad you were diagnosed with MS and share this disease with so many, I am also delighted that you found us and shared your thoughts about this very recent and life-changing diagnosis.
Fear of the future seems to be a universal concern felt not only by people living with MS (PlwMS) but also for those diagnosed with other kinds of chronic medical conditions. Personally, I was afraid I was going to die. Fear gripped me for the first three and a half years. I stopped being scared because of the fact that, not only did I not die (no surprise there), I thrived during that time! With so much uncertainty about the when and how of our next MS event, we do learn to live in the moment.
Thank you so much for having the courage to give us a snapshot of how you're feeling about your new diagnosis. It will be just as interesting to read your thoughts about it a year from now and five years out, having lived longer with MS and the perspective you bring to this, and to the life you will live from now on.
Cheers, Kim, moderator
Hi
. So often, people are diagnosed with MS when they are either entering or recovering from a relapse. It sounds like you were beginning one when you had your first MRI. Hopefully, you have now peaked and will begin to see some improvement. Some people recovered almost fully after a relapse. You could be one of those people. MS is scary. It is completely unpredictable, which makes it extremely difficult not to worry. The best thing you can do now is to try to keep busy during these next five weeks and keep your stress levels down. Stress will make your symptoms worse. You can't change the things that are making you feel stressed, but you can change your body's chemical reaction to those stressors with meditation. Here is a video about guided meditation that might interest you: https://multiplesclerosis.net/video/guided-meditation. If you don't have much time, you can try meditation apps for a few minutes each day. Anything helps. As you can see from the responses of and , you have come to the right place. You will find lots of support here from people who have been where you are now and want to help. Keep us posted, if you don't mind. We will be thinking of you. - Lori (Team Member) Mellow-Miss:
Wow!!! OMG!! I am also sorry you are going through this. Am glad you found this community, please stay with us; if there is anything the moderators or commentators like me can do, please let them or me know. At last count, I have 39 lesions with the majority of them being "black-holes" (where the MS disease cuts through the nerve fiber (Axon) completely).
Yikes!!! You most likely will not have these. For me, they first showed up when I had MS for 11 years; come April 2023, I will have had it for 19 years.
Regarding your DMT switch; I was once on Tecfidera, but the doctor at that time took me off of it due to side effects. I am now on Kesimpta and I find it very tolerable; the side effects have been next to nothing for me. It is a very effective drug for me; no new lesions since I have been on it. Just recently my current doctor wanted me to go on another drug called Mavenclad; I told her that I did not like the dosing schedule nor the side effect profile and why. I told her that I wanted to stay on Kesimpta; so, after further discussion, she relented and allowed me to stay on Kesimpta. In the meanwhile, google "disease modifying treatments for MS"; this search should bring up the full list of these that are available for us to take. If you haven't already; I strongly recommend googling each of these drugs on that list and find out which ones you would like to use, then present your findings to your doctor at your next appointment, this will assist both you and your doctor to know which DMT to use.
Hope this was helpful. Please keep us posted.
