Help and ramble about kesimpta.
Hi everyone, this is my first post on here.
I have been diagnosed with spms since may 5th of 2013,at that time I wasn't able to walk as I barely could move my arms and my right eye was having a hard time seeing. Spent a month in the hospital with that to come home as after 6 months of that I stopped all the meds I was on and started walking again. ( mind you i been smoking weed since 14 and the docs said it's a high probability that I had MS roughly around 10 yrs old even tho I was a extremely active over weight child with baseball and being outside all the time). Now back to the point after I got to walking again i ended up in a major head on drunk driver car wreck that sent me into the windshield even with seat belt. I was rushed to the hospital to be sent to the icu for me to be put on life support on an off for almost a month because i would freak out wanting to take care of my mom who was in the wreck too just not understanding that i couldnt move. Finally woke up to find out that I shattered a bone in between my hip joint/pelic bone to where I couldn't walk once again and completely shattered my humorous bone to where my left arm was paralyzed I got myself once again back to walking with full use of my left arm with in a year and a half as there wasn't any new or active lesions due to hitting my head. Now once again a little less than year after all that craziness we go it cant get any worse! I'm healthy again walking doing my thing my mom is doing way better then boom I had a gran mal seizure due to all the scar tissue in my throat caused by being on life support. I ended up being on the sidewalk for roughly 5 mins bleeding out of the back of my head with minutes left before someone driving by stops. I get rushed to the er and to be once again put on life support for another month, to then wake up with a trachea in my throat. Multiple surgeries later with in that yea I get the trach out with no new or active lesions and my voice. So after all that I make it to a way better healthier me with out any MS treatments,well the best I can be with having spms, I use to weight 390 pounds as I got my weight down to 178 pounds,yet I'm still having issues with my MS. I am having problems with memory, major ms hugs, legs being jello throughout the day, having problems with conversations and comprehension. Then my mom past away almost 3 years ago, so her and I were best friends as I was a caregiver to her during everything as she would help me too so now life is thrown in to a whirlwind. I do have a fiancée as we are going on 5 years and a daughter on her behalf too. Now at that time taking on everything, being a super adult as a full time homeowner, mom, Bill tender and etc that her an I started looking into treatments. After all the looking testing and blood work we finally settled on kesimpta which I officially started back in September 2025.
Everything started out promising. I'm going hey I did an amazing job taking care of myself with the stage I have and all the outside stuff that happened with nothing extra popping off with MS as i just need some help with the other stuff i cant control myself.Yet it is true I woke up one day unknowing and not moving because of said disease as this medicine is suppose to help prevent that from happening again too.
I'm hyping myself up and keeping hope that it will be okay ( my body truly rejects alot of meds and stuff like that toi ) but now for the past 3 months I feel I'm going down hill...
I feel more tired than I ever had before, I find myself zoning out more than before, I find myself forgetting more than not, I'm having more difficulty speaking at times. I actually hurt more than I did before , I am losing hair, having sexual dysfunction, my monthly women cycle is funky and I myself feel all around funky. I do have good days but all that stuff I just said comes about more.
So now I'm in a huge toss up on stopping all together because there really isn't any other DMT treatments for my spms for the fact that I'm also high pml Risk to but I also don't want to wake up one day not moving again whether it's from the meds or MS all together. I'm only 36 yrs old been through hell and back but I truly just want to live to die not die to live !!!
Sorry for the long story I just feel that's important to explain where I was to what I over came and what is going on now with and without the the treatments.
So thank you for taking your time out to read, I hope you all have a wonderful day and stay fighting no matter what MS Warriors.
