ghosts
02-28-2005, 10:10 AM
Hi everyone, I'm new to this board. I actually registered for the depression board, but I thought I'd come to this one as well because my brother has a neuropathy. Hopefully I can get most of the details right.
It started when he was 17 in his junior year in high school. He was at a friend's house when his knees suddenly gave out. This continued, where he would suddenly fall, generally if something startled him. My dad would tell him it was because he didn't excercise enough, so his legs were weak. It continued to get worse through his senior year. We live in snowy Massachusetts, so we'd have to walk through this snowy path- it was plowed, but rough. He fell a few times on the path. He eventually got an elevator key, because the stairs and crowds got too difficult.
I'm not sure when exactly my parents took him to the doctor- probably in his senior year. I remember when he graduated I was just hoping he wouldn't fall when he walked up to get his diploma.
Things continued to get worse in college. He got a handicap parking pass in his freshman year. He started walking with a cane. His arms were also affected, so he couldn't stop himself from falling. You can just touch him and he get's startled and he'll fall. And because it affects his hands, it also makes him hard to grasp things- like if he tries to hit the on button on a computer, it takes him a few tries because he keeps missing it. My parents have to cut his meat now too because it's too hard for him to do it himself. He's afraid of falling and hurting himself really bad, like hitting his head against something. He's gotten some pretty nasty bruises from this. He also just got on a kind of disability plan, finally. Politics are awful. He gets money every month now, so it helps a lot with that.
He's 21 now. The doctors still don't know what it is. They had thought a few years ago that it was CIDP and he was getting an iv every month in Boston for a year, but it didn't help. He is on klonopin to help with shakiness. He has also had 2 seizures since he got the neuropathy, about a year apart from one another, which seems pretty strange. He's on a medication for that as well.
Well, I guess that pretty much sums it up- Mass General doctors don't know what is wrong with him. Me and my parents were tested to see if it was hereditary, but it's not. I think the doctors did find something abnormal with his nerves, but I don't know the details at the moment. There's no numbness or anything either. I'm sure this probably sounds familiar to some of you, since they tried to diagnose him with various neuropathies, but it seems like he never met all of the symptoms. He doesn't seem like he's gotten any worse in the past year or so, but I'm always afraid of that, and that he'll really hurt himself. It's so unfair that he has to go through this at such a young age.
It started when he was 17 in his junior year in high school. He was at a friend's house when his knees suddenly gave out. This continued, where he would suddenly fall, generally if something startled him. My dad would tell him it was because he didn't excercise enough, so his legs were weak. It continued to get worse through his senior year. We live in snowy Massachusetts, so we'd have to walk through this snowy path- it was plowed, but rough. He fell a few times on the path. He eventually got an elevator key, because the stairs and crowds got too difficult.
I'm not sure when exactly my parents took him to the doctor- probably in his senior year. I remember when he graduated I was just hoping he wouldn't fall when he walked up to get his diploma.
Things continued to get worse in college. He got a handicap parking pass in his freshman year. He started walking with a cane. His arms were also affected, so he couldn't stop himself from falling. You can just touch him and he get's startled and he'll fall. And because it affects his hands, it also makes him hard to grasp things- like if he tries to hit the on button on a computer, it takes him a few tries because he keeps missing it. My parents have to cut his meat now too because it's too hard for him to do it himself. He's afraid of falling and hurting himself really bad, like hitting his head against something. He's gotten some pretty nasty bruises from this. He also just got on a kind of disability plan, finally. Politics are awful. He gets money every month now, so it helps a lot with that.
He's 21 now. The doctors still don't know what it is. They had thought a few years ago that it was CIDP and he was getting an iv every month in Boston for a year, but it didn't help. He is on klonopin to help with shakiness. He has also had 2 seizures since he got the neuropathy, about a year apart from one another, which seems pretty strange. He's on a medication for that as well.
Well, I guess that pretty much sums it up- Mass General doctors don't know what is wrong with him. Me and my parents were tested to see if it was hereditary, but it's not. I think the doctors did find something abnormal with his nerves, but I don't know the details at the moment. There's no numbness or anything either. I'm sure this probably sounds familiar to some of you, since they tried to diagnose him with various neuropathies, but it seems like he never met all of the symptoms. He doesn't seem like he's gotten any worse in the past year or so, but I'm always afraid of that, and that he'll really hurt himself. It's so unfair that he has to go through this at such a young age.
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OTabby
05-13-2005, 12:29 AM
I'm sorry to hear about your Brother,so young.
I can't give you any medical advice.Just continue to be a loving & supportive Family.
Take Care JL †
I can't give you any medical advice.Just continue to be a loving & supportive Family.
Take Care JL †

