Hi all, I may be having a hysterectomy soon and I haven’t started my DMT yet. For me, the priority is the DMT since I’m having pseudo flares often and my inflammation is high. However, I am worried about immune issues and surgery. Has anyone here had surgery whilst on Kesimpta with lower immunoglobins? How did it go?
I’m in the process of getting my vaccines before starting Kesimpta, and I had my first shingles shot. Now several days after that I feel like I’m in a pseudo relapse or something. My eye is slightly blurry, tingling in legs, anxiety, spasms, legs locking at times, numbness etc. I have 3 more vaccines to go this month and I’m stressed about my immune response. My neurologist said it’s fine and I need to get the vaccines. Has anyone dealt with this? How long for your flare to go away? Thanks!
Being diagnosed with MS was a shock, and I didn’t take it well like many of you I’m sure, but something changed in my brain. It’s like all the pieces of my life clicked and then I had a sense of overwhelming calm and duty. It’s almost like another person or entity took over.
Prior to MS, I was trying to please everybody and was waiting hand and foot on people, especially my mother who is a huge narcissist. If anyone has been raised by narcissistic parents, you already know the whole “slave” thing - always being available for every little problem and essentially becoming your parents secretary, care giver, problem solver, etc in the instant they need something. And I’d be this way for a lot of people because I grew up seeking approval and validation, by constantly putting others needs before mine.
Well this diagnosis changed that. I finally see my life clearly, all the past trauma, hurt, the toxic people around me. It’s probably a large chunk of what lead me to all my autoimmune issues. And I’ve said no more and it’s like a firm, cold boundary that seems unwavering. And I’m getting called “selfish” and a “cold evil person” because I’m choosing to help myself, to love myself, to live with an incurable progressive disease in a positive manner despite all the negatives that my MS is throwing at me. Something I didn’t do prior to MS.
But aren’t our minds amazing? That something like this could happen? I guess I’m trying to be positive, but I’m proud of myself for seeing the light. It feels like a monumental shift and I cannot explain how it happened. Well, guess who isn’t happy? All the narcs that I now am setting boundaries with. They are spiraling. And I feel psychologically free.
Has anyone done this? Starting Kesimpta soon and need to do a round of vaccines including shingles, DTAP, Hep B, pneumonia. I’m really scared of side effects. I also don’t want to wait several more months before starting treatment considering I have to travel starting October. Tips and tricks? Thank you 💫
Hello everyone, I’m really confused about what treatment I want to start. I told my neurologist that maybe Kesimpta is the way because it’s home injection but my biggest concern has always been infection risk since I have a lot of other issues going on. I’ve been reading about Tysabri and notice that it doesn’t really suppress your immune system. My neuro actually mentioned this drug first but the PML talk and every 4 week infusion turned me off. But now I’m thinking more about it.
If I started on Kesimpta, would it be possible to switch to Tysabri later on if Kesimpta was causing too many issues? Or would the depleted B cells be an issue and I’d have to wait for them to come back? I also read that once you’re on Tysabri, you can’t really stop it suddenly even with PML risk as there is a rebound effect. Does anyone have any experiences or knowledge about this? I’m just so confused now and anxious.
I have a lot of travel and social events coming up in the fall, including being in very crowded spaces and overseas flights and I’m scared about my immune system being crap. Thank you 💫
Hello everyone, newly diagnosed here. According to my neurologist, I’m diagnosed in an “old age” in regard to MS (41) since most people find out in their 20s/early 30s according to him. I don’t know how long I’ve had MS, definitely for at least 6 years, but possibly much longer. In that time, I would have random symptoms here and there but would always shrug them off and keep on. Since my diagnosis, I am starting to feel every single nerve, twitch, muscle spasm, vibration, etc.
It’s almost like my MS is much more active now that I know I have it, if that makes sense. Anyone else experience this where also the symptoms sort of feel worse? It’s giving me anxiety because now I’m constantly wondering if I’m on the brink of a relapse or emergency. It’s been really hard to deal with the news, especially since my MS is considered highly active (lesions in brainstem and spine). How do you guys deal with this? Just the constant sudden body awareness?
Hi everyone
I’m starting Kesimpta in a few weeks and my first shot will be at the neurologists office to ensure I will do it correctly. Has anyone experienced this? I’m worried about loading dose. They said they’d keep me there for about an hour to see if I have any reactions.
Secondly, my neurologist didn’t really know about loading dose reactions and said it’s not a big thing and that Kesimpta lowers immune system but it’s also not a big deal and can live my life normally. I’ll be monitored to start every 3 months. No mention of getting any vaccines. I have a very high CRP, over 30, that has been that way for years and no one can figure out why. Had all infection screenings, bloodwork, CT scans and colonoscopy, etc with no results. He said that my CRP won’t mean anything for the DMT, but I’m worried that Kesimpta will make it worse.
Any one have experience with all of this? I’m pretty stressed about starting the meds though I know I have to 🫠
Hi all, I’m in Central Europe and we are entering a two week long extreme heatwave. I have a portable air conditioner but it’s confined to one room and doesn’t cool as good since the exhaust gets hot (I have it insulated too, and it is going outside the window) and I work somewhere with no AC. Most stores don’t have AC and I live in the middle of the city with little airflow. I’m quite nervous as this is the first summer of my diagnosis and I’m still recovering from my first major relapse so everything is still inflamed, weak and I have anxiety. The suffocating humidity and heat make it feel like I’m dying.
How do you guys deal with the heat, especially in places with no AC?
I just have to vent for a minute. I’m newly diagnosed with 20 bands, lesions on brainstem and spine, high igG index and whilst my symptoms aren’t super obvious (not disabled), I have highly active MS. I’m waiting for neurology so I can start a DMT asap. That being written, I’ve recently encountered a couple people with MS in my community that have really rubbed me the wrong way.
The more I learn about this disease, the more I realize just how varied it is. It’s not a one size fits all yet some people seem to think that it is just because THEY feel good or have no more lesions. So I got this advice - don’t poison yourself with DMT, go the natural route instead - high quality oils, less stress, organic food and exercise, vacations- apparently this person “cured” their MS in this manner and their lesions on the brain have actually disappeared!!!! Imagine that!!
I was like, good for you but I don’t just have brain lesions, I have systemic symptoms, whilst “invisible” to you, are horrible to me. I just couldn’t believe it. Then I was going through many posts here and have seen similar comments, from people who are in a lucky spot and have decided to forgo medical advice. I just wonder when the luck runs out because as far I know from my research, ms never goes away.
/rant. 😂 thanks for reading 🫠
EDIT: I am definitely not against incorporating a healthy lifestyle as it’s important to keep inflammation down but I don’t think it’s any kind of DMT substitute