Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 In a message dated 9/10/2001 5:19:21 PM Pacific Daylight Time, wingeddeer7@... writes: > That ought to be real fun! Anyhow what if any information > do people have on brain wave testing, also has anyone had a mild seizure > due to cmt? We are not saying that this is a seizure hopefully this > would be ruled out, crossing my fingers. > > I girl in my brownie troop has these seizures. I forget what was causing them but she is now on medicine and doing fine. I had a brain wave test when I was in 4th grade. Not painful at all. Spencer just had an MRI and CAT SCAN for migraines. Good luck with Seth. I bet its not related to CMT. I am sure they will have meds for it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Oh, my GOSH! I do that sometimes! I'll be talking and then totally blank out for no reason whatsoever, or immediately fall into a panic attack because I can't collect my thoughts back and people look at me funny. (It's very embarassing.) It is the _strangest_ thing, and it feels kind of odd. I had a seizure when I was 6 years old for no reason at all. The doctors could never figure out why. I had all the testing done, and it seemed very mysterious. I didn't have the type of seizure where you go into spasms, and all of that. It was in school, and I simply fell into a coma-like state, and the last thing I remember was calling for the teacher. I then slipped out of my chair. I don't remember anything else, except waking up later in the hospital. My mother said that while I was in this state, I simply stared straight ahead blankly, and never blinked. It was very frightening for her. I can't say all of this is due to CMT, but it is very interesting. I have forever wondered why I had the 'blanking out' problem, and the seizure when I was younger. They feared I would have another, but I haven't had one of those types of seizures again so far. (Let's hope I won't!) That has been years (being that I'm 21). Anyway, I really do hope your son will be alright. (and if anyone else has any answers for me also, it would be appreciated.) ~*Sylvershine On Mon, 10 Sep 2001 20:19:07 -0400 Heidi Willey-Hersey <wingeddeer7@...> writes: > Hello All, > Today my son and I went to See a neurologist. He has been having > like > blank outs. He will be talking right along then stop short in the > middle > of his sentence. So we went to the neurologist today. It was a > relief to > go to someone that listened. She even had a good bed side manner. > So > anyhow she gave me information that we could use as a family. Like > all > we have to do is DNA testing and not EMG testing for Cmt. I had put > my > oldest son through the emg testing and would not put my others > through > that so, I guess I was afraid of them going through the experience. > I > myself went through the emg testing, and I had very little > difficulty. > Then I don't have much feeling so it was a peculiar feeling. > Anyhow on the 27 of the month the neurologist is going to do a > brain > wave test on my oldest son. He can only have four hours of sleep > the > night before. That ought to be real fun! Anyhow what if any > information > do people have on brain wave testing, also has anyone had a mild > seizure > due to cmt? We are not saying that this is a seizure hopefully this > would be ruled out, crossing my fingers. > > Thanks for all your support, > Heidi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Hello, Yes, it sounds very much like my sons state. He has not had any shaking or things like that either. So the question is, does it have to do with nerves? Thank you for responding Heidi sylvershine@... wrote: > Oh, my GOSH! > > I do that sometimes! I'll be talking and then totally blank out for no > reason > whatsoever, or immediately fall into a panic attack because I can't > collect > my thoughts back and people look at me funny. (It's very embarassing.) > It is the _strangest_ thing, and it feels kind of odd. > > I had a seizure when I was 6 years old for no reason at all. The doctors > could never figure out why. I had all the testing done, and it seemed > very > mysterious. I didn't have the type of seizure where you go into spasms, > and all of that. It was in school, and I simply fell into a coma-like > state, > and the last thing I remember was calling for the teacher. I then slipped > out > of my chair. I don't remember anything else, except waking up later in > the hospital. My mother said that while I was in this state, I simply > stared > straight ahead blankly, and never blinked. It was very frightening for > her. > > I can't say all of this is due to CMT, but it is very interesting. I have > forever > wondered why I had the 'blanking out' problem, and the seizure when I > was younger. They feared I would have another, but I haven't had one > of those types of seizures again so far. (Let's hope I won't!) That has > been > years (being that I'm 21). > > Anyway, I really do hope your son will be alright. > (and if anyone else has any answers for me also, it would be > appreciated.) > > ~*Sylvershine > > On Mon, 10 Sep 2001 20:19:07 -0400 Heidi Willey-Hersey > <wingeddeer7@...> writes: > > Hello All, > > Today my son and I went to See a neurologist. He has been having > > like > > blank outs. He will be talking right along then stop short in the > > middle > > of his sentence. So we went to the neurologist today. It was a > > relief to > > go to someone that listened. She even had a good bed side manner. > > So > > anyhow she gave me information that we could use as a family. Like > > all > > we have to do is DNA testing and not EMG testing for Cmt. I had put > > my > > oldest son through the emg testing and would not put my others > > through > > that so, I guess I was afraid of them going through the experience. > > I > > myself went through the emg testing, and I had very little > > difficulty. > > Then I don't have much feeling so it was a peculiar feeling. > > Anyhow on the 27 of the month the neurologist is going to do a > > brain > > wave test on my oldest son. He can only have four hours of sleep > > the > > night before. That ought to be real fun! Anyhow what if any > > information > > do people have on brain wave testing, also has anyone had a mild > > seizure > > due to cmt? We are not saying that this is a seizure hopefully this > > would be ruled out, crossing my fingers. > > > > Thanks for all your support, > > Heidi > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 That's interesting. I'll have to look more into this. I have no idea. Unfortunately, I can't answer it. I just had to reply. :-P On Mon, 10 Sep 2001 21:33:02 -0400 Heidi Willey-Hersey <wingeddeer7@...> writes: > Hello, > Yes, it sounds very much like my sons state. He has not had any > shaking or > things like that either. So the question is, does it have to do with > nerves? > > Thank you for responding > Heidi > > sylvershine@... wrote: > > > Oh, my GOSH! > > > > I do that sometimes! I'll be talking and then totally blank out > for no > > reason > > whatsoever, or immediately fall into a panic attack because I > can't > > collect > > my thoughts back and people look at me funny. (It's very > embarassing.) > > It is the _strangest_ thing, and it feels kind of odd. > > > > I had a seizure when I was 6 years old for no reason at all. The > doctors > > could never figure out why. I had all the testing done, and it > seemed > > very > > mysterious. I didn't have the type of seizure where you go into > spasms, > > and all of that. It was in school, and I simply fell into a > coma-like > > state, > > and the last thing I remember was calling for the teacher. I then > slipped > > out > > of my chair. I don't remember anything else, except waking up > later in > > the hospital. My mother said that while I was in this state, I > simply > > stared > > straight ahead blankly, and never blinked. It was very frightening > for > > her. > > > > I can't say all of this is due to CMT, but it is very interesting. > I have > > forever > > wondered why I had the 'blanking out' problem, and the seizure > when I > > was younger. They feared I would have another, but I haven't had > one > > of those types of seizures again so far. (Let's hope I won't!) > That has > > been > > years (being that I'm 21). > > > > Anyway, I really do hope your son will be alright. > > (and if anyone else has any answers for me also, it would be > > appreciated.) > > > > ~*Sylvershine > > > > On Mon, 10 Sep 2001 20:19:07 -0400 Heidi Willey-Hersey > > <wingeddeer7@...> writes: > > > Hello All, > > > Today my son and I went to See a neurologist. He has been > having > > > like > > > blank outs. He will be talking right along then stop short in > the > > > middle > > > of his sentence. So we went to the neurologist today. It was a > > > relief to > > > go to someone that listened. She even had a good bed side > manner. > > > So > > > anyhow she gave me information that we could use as a family. > Like > > > all > > > we have to do is DNA testing and not EMG testing for Cmt. I had > put > > > my > > > oldest son through the emg testing and would not put my others > > > through > > > that so, I guess I was afraid of them going through the > experience. > > > I > > > myself went through the emg testing, and I had very little > > > difficulty. > > > Then I don't have much feeling so it was a peculiar feeling. > > > Anyhow on the 27 of the month the neurologist is going to do > a > > > brain > > > wave test on my oldest son. He can only have four hours of > sleep > > > the > > > night before. That ought to be real fun! Anyhow what if any > > > information > > > do people have on brain wave testing, also has anyone had a > mild > > > seizure > > > due to cmt? We are not saying that this is a seizure hopefully > this > > > would be ruled out, crossing my fingers. > > > > > > Thanks for all your support, > > > Heidi > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Actually, they put me on meds after I had this, and they were AWFUL. Do you know what medicine they are giving her? I hope it wasn't what I had. It wasn't doing me good at all, only doing alot of bad. They actually took me off of it, and I didn't even need it. Of course, if this girl keeps having them, she could have epilepsy and perhaps it is something totally different. On Tue, 11 Sep 2001 00:06:11 EDT Mommy2Adam@... writes: > In a message dated 9/10/2001 5:19:21 PM Pacific Daylight Time, > wingeddeer7@... writes: > > > > That ought to be real fun! Anyhow what if any information > > do people have on brain wave testing, also has anyone had a mild > seizure > > due to cmt? We are not saying that this is a seizure hopefully > this > > would be ruled out, crossing my fingers. > > > > > > I girl in my brownie troop has these seizures. I forget what was > causing > them but she is now on medicine and doing fine. > I had a brain wave test when I was in 4th grade. Not painful at all. > Spencer > just had an MRI and CAT SCAN for migraines. Good luck with Seth. I > bet its > not related to CMT. I am sure they will have meds for it > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2001 Report Share Posted September 11, 2001 Heidi I know all the information does say that CMT does not affect the brain but I sometimes wonder. I don't have blackout but I can be saying something and then totally forget what I talking about and this has only really started since my CMT really kicked in. I'd be interested on others thoughts about this because there is still so much to find out about CMT. Good luck with the tests and trying to stop a tired child from sleeping - ouch! Love Sue The important thing is never to stop questioning. Website www.horder-mason.freeserve.co.uk Freelance Writer and CMTer " I Thank God for my handicaps, for through them, I have found myself, my work, and my God. " - Helen Keller ----- Original Message ----- From: Heidi Willey-Hersey Sent: Tuesday, September 11, 2001 1:19 AM Subject: [] Brain Wave Test- Hello All, Today my son and I went to See a neurologist. He has been having like blank outs. He will be talking right along then stop short in the middle of his sentence. So we went to the neurologist today. It was a relief to go to someone that listened. She even had a good bed side manner. So anyhow she gave me information that we could use as a family. Like all we have to do is DNA testing and not EMG testing for Cmt. I had put my oldest son through the emg testing and would not put my others through that so, I guess I was afraid of them going through the experience. I myself went through the emg testing, and I had very little difficulty. Then I don't have much feeling so it was a peculiar feeling. Anyhow on the 27 of the month the neurologist is going to do a brain wave test on my oldest son. He can only have four hours of sleep the night before. That ought to be real fun! Anyhow what if any information do people have on brain wave testing, also has anyone had a mild seizure due to cmt? We are not saying that this is a seizure hopefully this would be ruled out, crossing my fingers. Thanks for all your support, Heidi Quote Link to comment Share on other sites More sharing options...
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