Ask HN: HNers with multiple sclerosis, can we get in touch?

355 points

4 years ago

I was diagnosed with MS 15 years ago, and was doing pretty well for a long time, but with the pandemic experienced a tremendous amount of stress that has left me with my first major flare-up since diagnosis and, more importantly, developing over the past 3 years, a feeling in my brain that feels like having been lobotomized, and symptoms like "mild" dementia. Difficulty multitasking, make silly mistakes, mentally tired easily, emotional issues, etc.

The MS was so far outside my concerns for all these years that I didn't know about the cognitive effects of MS (though I retrospect I realize I had some milder form of these symptoms all along), but I now understand MS causes brain atrophy and damage irrespective of flare-ups and lesions.

I've tried many things to make it better over this past year especially, but it's getting worse. It's quite evidently different from depression, it feels like I've lost part of my brain, which seems to be what's happening with MS.

I'm posting this in hopes I can get in touch with others with MS that are programmers and are doing well, and have found ways to make this better, or have gone through periods where they felt like this and it improved. I can't imagine living like this with worsening, I don't have any support from family and any savings (lost an enormous amount of life-changing money few years ago), my programming abilities have waned, and if I can't support myself in the future I'm going to end up homeless.

I want to believe I can do something, that there is hope, perhaps medical advances, or anything I could do.

If you want to get in touch my email is mush_room_hn at protonmail.com. (but you could also reply here)