Struggling after all these years...
I've had MS for 25 years, my last fare up was 20 years ago.. I have been very fortunate and I fully recognize that. I rarely have typical symptoms, though I do have trouble sleeping, I am currently at a cross roads, I feel I might be being stupid for lack of a better word, because I am considering not going back on therapy! The other side of this coin, tells me to snap out of these delusional thoughts! Its just that I feel pretty great right now, its been a while since I've felt this good. I had been on immune suppressing medication (copaxone) since I was diagnosed in 2000. After all that time, one lesion showed up imy last mri. I was told no more copaxone, i have to pick something new. The new meds are terrifying, i have tried a couple oral meds, both messed with my stomach. Now over a year later...faced with Mavenclad. I'm finding that very scary. Again, it's been over a year since I've been on anything. I'm finding it so hard to go back to it now... much less this one that feels pretty extreme in comparison to copaxone. I feel like I'm doing pretty great, but now I'm gonna take these meds that are probably going to make me sick, or at the very least be constantly worried that'll catch something, require regular blood work to check various levels, not to mention horrifying possible side effects. I'm sure you can all relate....we're all in very similar boats. Are there any of us that choose no therapy? If so what do you do? Feel free to tell me I'm being foolish for even considering that as an option.
In the kindest way possible, yes, you are being foolish. There will be a few people popping up who will tell you that they've been well and healthy without DMDs for 20+ years etc etc. They're in the vanishingly rare minority and in fact when people with so-called 'benign MS' are subjected to the appropriate testing, it emerges that the majority have significant cognitive dysfunction. You've done so well on Copaxone - given this is a lower efficacy medication, you've clearly been a super-responder to still have no disability 25 years into your course. But your disease is still active as evidenced by your latest MRI. You're still very young (assuming your age at diagnosis was 16 and you're now 40ish?) and you are in a really strong position to stop or substantially slow any disability progression. The risks of DMDs are negligible (especially in the <65s) compared with the natural course of MS. This man - recent retired London neurologist, Gavin Giovannoni, explains it better than I can, using singer-songwriter Chad King as his example. https://gavingiovannoni.substack.com/p/the-chad-king-syndrome This is a really key statement: "People who promote lifestyle interventions as an alternative treatment to modern MS disease-modifying therapies are wrong. They are misinformation and, at worst, disinformation practitioners and don’t have a deep understanding of what MS is as a disease. A large number of these practitioners who promote lifestyle interventions as an alternative treatment for MS back up their positions with conspiracy theories."
@mellowmedusa Thank you. I needed to hear that, I do know you're right. I'm being ridiculous. I was diagnosed when I was 25, I'm 51 now. I'll do the right thing. Just a little terrified. I'll get past it, thank you again.