How to Describe MS
How would you describe MS to someone who has no idea what MS is?
It is a Devil disease. It attacks your strength, balance, memory, basic human functions. There is no cure. Some drugs help with the symptoms, always with some sacrifices.
Ali.K, I get Ocrevus every 6 months. Ocrevus can only possibly slow down or even stop the progression. It does not fix anything. Does it work? How would anyone know?
Perfect Description
I tell everyone who asks that MS means that my immune system has identified my nervous system as a disease or an injury, so it thinks that it's helping me by fighting against it. Unfortunately, my nervous system was unprepared for the battle. 😉
This is a really good way to describe MS Lia. An internal battle. How have you been doing lately?? 🧡 Kayleigh, MultipleSclerosis.net team
I'm doing pretty well. I just started Kesimpta, so I'm waiting to see how that goes. I figure that as long as I keep my spirits high and refuse to give up, I'll be doing okay. 😀
I have been on and off kesimpta due to issues with my insurance carrier. This time being off for 5 months I did not bounce back. My balance is terrible. I fall into walls. I just now getting a cane. Do anyone have lower back pain and weakness in legs?? And how do you manage it? while I do hope our community member responds with her experience, I wanted to send over this article from one of our members: https://multiplesclerosis.net/stories/i-hold-the-power-to-heal and this forum discussion: https://multiplesclerosis.net/forums/leg-and-arm-weakness. I hope this is helpful for you. Jill (Team Member)
After describing the myelin sheath stuff, I would say that there are as many different appearances to this disease as there are people who have it. Because you know someone with MS who runs marathons doesn't mean we all can. Also, just because you know someone who has MS and is in a wheelchair that we all will be. I would say, please listen to what is going on with me and don't try to fix it. Just listen. This disease is sneaky.
This is such great advice and so so true! MS presents so wildly different in everyone. Listening is key. Thank you for sharing this with all of us! 🧡 Kayleigh, MultipleSclerosis.net team
