All about perspective..
I had my follow up appointment yesterday with my cervial spine MRI. Didn’t show really any changes.. clearly I have something going on. It’s been since March / April and my brain MRI 1st at the end of April almost May by this point showed a lot of old lesions and “black holes” basically.. Long story short.. I am actually in smoldering stage of MS. It’s a real thing not just the TikTok trend few years back. I am going to make some medication changes.. swallow test and start water therapy along with a 80-20 diet change in my food. I go back in 3 months to see how things are and then another 3 months to see where I am but then. So basically in 6 months .. we will see where I am and if a DMT is actually needed.
Now don’t come for me on that.
I have had MS officially almost 15 years. Along this crazy train.. I have also realized with my Drs.knowledge .. can’t ever had steroids again. Did you know there’s a 1-3% chance you can go into complete psychosis?! Well if there’s any of it’s “just” 1-3 chance it could be you. PUT MY NAME AND FACE BESIDE IT! 😳🤣🫣
Trying to avoid new DMT for now.. because we know most require you to have them.
Ok I’m done with my long post. This is my outlet to share with people that actually understand it.
Much love..
Jess
🧡 🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡🧡
Sorry to hear you can't have steroids, that is a serious problem. I hope that wasn't the case when you had the Lemtrada, it was tough enough with the steroids, can't imagine adding psychosis into the mix, yikes! What is the smouldering phase of MS? I've not heard of that term before, is it the same as PIRA, progression independant of relapse activity? I'm curious from a selfish perspective as I had Lemtrada in 2022 and 2023 and wondering how long it will keep the MS quiet. According to my MRIs and the neurologists all is peachy but my symptoms are slowly worsening. I'm getting suspicious! Hope you find something that works for you.
I was on Copaxone 12 years. Then after my daughter said she came off her DMV and stayed off any MS meds, I decided 3 years later to stop mine altogether. I am now on year 7 not using any DMV. My MS has continued to be mild so far. I have read or heard that aging can lesson MS progression, and so maybe that is true for me. I turned 78 last March. I was about 71 when stopped using a DMT. I feel the same as I did before and after using a DMT for 12 years. I still walk without any aide. I have not been very active doing anything but I think that is because I am bored and just don’t have a desire to do much of anything. Also I am worried b/c the latest move to make it difficult to not get estrogen for HRT ( hormone therapy )so I tried cutting down on what I was taking and I had miserable time for over a week and I went back on it and still have trouble sleeping now and sweat a lot and have hot flashes I didn’t have, but I’m trying to get back on it as I do have a lot of them left however I’m hoping that something will change before I run out of what I have so when I need to get more HRT pills hopefully it will become available. I hate the way these pharmacies and maybe those in charge of deciding what it is we do and don’t need play with our lives.