5 ms·

I’m a programmer with MS. Like you, diagnosed about 15 years ago, but still doing pretty well. I feel like I’m starting to notice the gradual decline more and

I’m a programmer with MS. Like you, diagnosed about 15 years ago, but still doing pretty well. I feel like I’m starting to notice the gradual decline more and more, despite not having had a serious clinical relapse for about 10 years (some minor ones). Things you can try: Changing your drugs - maybe going for something drastic like HSCT. Being patient and not panicking - if you’re currently having flare ups your symptoms will appear worse than they really are while there’s acute inflammation happening. Don’t forget that. If the flare ups get under control you’ll should see some recovery and improvement. Not giving up - keep pushing yourself as hard as you can, make sure you’re training whatever’s left of your central nervous capacity. There’s probably still some left. Keep trying to do as much as you can and you’ll get access to it.

mush_room 4y ago
Thank you. May I ask what are you planning for yourself in the future? I've heard that HSCT is not recommended after 40. Are you on any drugs and have they helped?
- bennyelv 4y ago
  I’m doing ok on ocrelizumab ( 3rd year just done) and had a good innings with natalizumab before that. In the UK I’m not eligible for HSCT unless I relapse on ocrelizumab. That may change of course. I’m not sure whether HSCT is right for me given that it has some pretty big downsides. My latent symptoms are well controlled at the moment and don’t affect my quality of life too much. If I had to manage a thyroid disorder as a result of HSCT I’m not sure that would be an improvement for me.
  - mush_room 4y ago
    I thought HSCT could halt the disease entirely, but I'm not sure... It's the silent progression of the disease that worries me.
    - bennyelv 4y ago
      Me too. I can see on my MRIs that my brain mass is decreasing, even though there are no new lesions. I'm not quite 40 years old yet and am physically and mentally very active. Does it matter? Time will tell...

mush_room 4y ago

Thank you. May I ask what are you planning for yourself in the future? I've heard that HSCT is not recommended after 40. Are you on any drugs and have they helped?

bennyelv 4y ago
I’m doing ok on ocrelizumab ( 3rd year just done) and had a good innings with natalizumab before that. In the UK I’m not eligible for HSCT unless I relapse on ocrelizumab. That may change of course. I’m not sure whether HSCT is right for me given that it has some pretty big downsides. My latent symptoms are well controlled at the moment and don’t affect my quality of life too much. If I had to manage a thyroid disorder as a result of HSCT I’m not sure that would be an improvement for me.
- mush_room 4y ago
  I thought HSCT could halt the disease entirely, but I'm not sure... It's the silent progression of the disease that worries me.
  - bennyelv 4y ago
    Me too. I can see on my MRIs that my brain mass is decreasing, even though there are no new lesions. I'm not quite 40 years old yet and am physically and mentally very active. Does it matter? Time will tell...