I am having a hard time emotionally right now and am hoping to hear from some long-time MSers. Here’s what’s up...
I’m 57, diagnosed 7 years ago. With the help of my very positive medical professionals, I was able to convince myself nothing bad was happening to me. Though I always had gnawing doubts about brain atrophy. My ventricles seemed largish on my MRIs.
My neuro dismissed my concerns. You can’t tell I have MS. No relapses on Copaxone. Everything is great.
Fast forward to today. New doctor and new MRI machine that actually measures atrophy by comparing my brain volume to a database of healthy people my age.
My results are not good at all! My brain is showing a ton of atrophy! In fact it’s shrunk down to be among the smallest 10% of the normal brains—for my age—with even worse results when you just look at gray matter.
I’m switching to Ocrevus next month, which should slow down the atrophy, but with aging and what I’ve lost already, I don’t think I’m going to avoid progressive disease.
So I’m just sitting with that. How do you get on with life knowing you’re facing a disabling old age? That you’re probably not going to work as long as you hoped? (Love my job. Also scared of being too poor to take care of myself.) That you can’t trust your memory? That you can’t do anything more to preserve your abilities or independence? That you are going to be a burden on your family, for years perhaps? Or worse, you might outlive them?
Okay, you can see I’m not holding it together at all. Any wisdom to offer?
I’m 57, diagnosed 7 years ago. With the help of my very positive medical professionals, I was able to convince myself nothing bad was happening to me. Though I always had gnawing doubts about brain atrophy. My ventricles seemed largish on my MRIs.
My neuro dismissed my concerns. You can’t tell I have MS. No relapses on Copaxone. Everything is great.
Fast forward to today. New doctor and new MRI machine that actually measures atrophy by comparing my brain volume to a database of healthy people my age.
My results are not good at all! My brain is showing a ton of atrophy! In fact it’s shrunk down to be among the smallest 10% of the normal brains—for my age—with even worse results when you just look at gray matter.
I’m switching to Ocrevus next month, which should slow down the atrophy, but with aging and what I’ve lost already, I don’t think I’m going to avoid progressive disease.
So I’m just sitting with that. How do you get on with life knowing you’re facing a disabling old age? That you’re probably not going to work as long as you hoped? (Love my job. Also scared of being too poor to take care of myself.) That you can’t trust your memory? That you can’t do anything more to preserve your abilities or independence? That you are going to be a burden on your family, for years perhaps? Or worse, you might outlive them?
Okay, you can see I’m not holding it together at all. Any wisdom to offer?
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