Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 What an amazing situation? Will she have one of the uteri removed? My oldest daughter is pregnant with her second but has had a lot of trouble conceiving because her tubes are all crooked. By the way, are you from the Midwest because we're having crazy weather , too, here in Nebraska. Jan seizures My daughter, who has multiple disabilities, has 2 uterus - uteri - whatever - and per a neurologist, this might lower her seizure threshhold. Apparently,hormones can cause seizures. She's going to be put out for dental work Monday. While she is out cold, the gyn is going to see if she has 2 cervix as well. Too wierd! She's 15 and only 4'8 " 82 lbs. Had an MRI of her feminine plumbing today. I practically had to lay in their with her to get her to hold still. One of the the uterus - uteri - might not have an opening. It might be just clogging up with endometrial tissue, causing her pain and monkeying with her hormones. This is what I hope it is because the birth control shots can stop her menses and maybe she won't have another seizure. I am accustomed to seizures because I work in adult special ed. Its just so different when its your family. Actually, I think the magnetism in the MRI helped me with my fibro. I expected to come out of there sore and I am not especially bad this evening. Better than usual actually, despite a 30 degree drop in temp and sleet. I am not totally exhausted for the first time in nearly 3 months. Thanks for the well wishes. Sometimes well-meaning people will say she's my little cross to bear, but to be honest, her gumption in the face of adversity humbles me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 What an amazing situation? Will she have one of the uteri removed? My oldest daughter is pregnant with her second but has had a lot of trouble conceiving because her tubes are all crooked. By the way, are you from the Midwest because we're having crazy weather , too, here in Nebraska. Jan seizures My daughter, who has multiple disabilities, has 2 uterus - uteri - whatever - and per a neurologist, this might lower her seizure threshhold. Apparently,hormones can cause seizures. She's going to be put out for dental work Monday. While she is out cold, the gyn is going to see if she has 2 cervix as well. Too wierd! She's 15 and only 4'8 " 82 lbs. Had an MRI of her feminine plumbing today. I practically had to lay in their with her to get her to hold still. One of the the uterus - uteri - might not have an opening. It might be just clogging up with endometrial tissue, causing her pain and monkeying with her hormones. This is what I hope it is because the birth control shots can stop her menses and maybe she won't have another seizure. I am accustomed to seizures because I work in adult special ed. Its just so different when its your family. Actually, I think the magnetism in the MRI helped me with my fibro. I expected to come out of there sore and I am not especially bad this evening. Better than usual actually, despite a 30 degree drop in temp and sleet. I am not totally exhausted for the first time in nearly 3 months. Thanks for the well wishes. Sometimes well-meaning people will say she's my little cross to bear, but to be honest, her gumption in the face of adversity humbles me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 What an amazing situation? Will she have one of the uteri removed? My oldest daughter is pregnant with her second but has had a lot of trouble conceiving because her tubes are all crooked. By the way, are you from the Midwest because we're having crazy weather , too, here in Nebraska. Jan seizures My daughter, who has multiple disabilities, has 2 uterus - uteri - whatever - and per a neurologist, this might lower her seizure threshhold. Apparently,hormones can cause seizures. She's going to be put out for dental work Monday. While she is out cold, the gyn is going to see if she has 2 cervix as well. Too wierd! She's 15 and only 4'8 " 82 lbs. Had an MRI of her feminine plumbing today. I practically had to lay in their with her to get her to hold still. One of the the uterus - uteri - might not have an opening. It might be just clogging up with endometrial tissue, causing her pain and monkeying with her hormones. This is what I hope it is because the birth control shots can stop her menses and maybe she won't have another seizure. I am accustomed to seizures because I work in adult special ed. Its just so different when its your family. Actually, I think the magnetism in the MRI helped me with my fibro. I expected to come out of there sore and I am not especially bad this evening. Better than usual actually, despite a 30 degree drop in temp and sleet. I am not totally exhausted for the first time in nearly 3 months. Thanks for the well wishes. Sometimes well-meaning people will say she's my little cross to bear, but to be honest, her gumption in the face of adversity humbles me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 I was going through all this this past year, and I have had seizures before, they were dxing my episodes as all TIA's and I was having the weirdest things happen to me that I did not understand. Not until my Dr saw a seizure hapen in her office did we really talk about all the smaller episdoes I was having and realize they were ALL seizures. Kim, I've never had a "seizure" diagnosed, but I do know I'm beginning to have problems with them. I can feel the left side of my face start to drag--and I find I'm biting the hell out of the inside of my cheek. Afterwards, I am exhausted-- but it's a different exhausted, like I'm not really there. My MD's attitude is we can run all kinds of tests, and even if they do show something--the course of treatment that I'm on now, is what they'd do--so why bother with the tests. I'm kind of split on my thoughts about this approach, and fortunately that article that Rose shared on the brain-- explained alot to me so that I can understand what parts of my brain are doing what-- so I can now explain it better to my docs. Mine haven't gone as far as a TIA or stroke, but I do watch this very, very closely. I have found lately, that I will be eating- and all of a sudden I can't turn the fork in my hand, so will actually have to use my other hand to make me let go of the fork, and then replace it in my hand so that I can use it. (My girlfriend laughed as she witnessed this the other day-- it was like I had to have two hands just to use the fork)--she was actually kindof scared, and asked me how long this has been going on. I'm hoping that by getting back on the Remicade, that this will stop and reverse itself like it did in the beginning of the clinical trial. It'll be the 22nd before I see the MD and get started either that Friday, or the following Monday. Love to all, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2005 Report Share Posted July 13, 2005 I hope you don't mind I read your response on seizures, Tracie, but something in there struck me, some days the left side of my mouth inside is so sore, when I look at it, it looks like I'd been biting it, although I don't feel like I bite it?? my left side is where I have decreased sensation anyway, I don't think I have seizures, but I wonder is I am just sometimes biting when I don't know it. Tracie, I hope they can get you started right away on your Remicade, you'll be in my prayers. Marla -----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of tiodaat@...Sent: Wednesday, July 13, 2005 3:28 PMTo: Neurosarcoidosis Subject: Re: seizures I was going through all this this past year, and I have had seizures before, they were dxing my episodes as all TIA's and I was having the weirdest things happen to me that I did not understand. Not until my Dr saw a seizure hapen in her office did we really talk about all the smaller episdoes I was having and realize they were ALL seizures. Kim,I've never had a "seizure" diagnosed, but I do know I'm beginning to have problems with them. I can feel the left side of my face start to drag--and I find I'm biting the hell out of the inside of my cheek. Afterwards, I am exhausted-- but it's a different exhausted, like I'm not really there. My MD's attitude is we can run all kinds of tests, and even if they do show something--the course of treatment that I'm on now, is what they'd do--so why bother with the tests. I'm kind of split on my thoughts about this approach, and fortunately that article that Rose shared on the brain-- explained alot to me so that I can understand what parts of my brain are doing what-- so I can now explain it better to my docs. Mine haven't gone as far as a TIA or stroke, but I do watch this very, very closely. I have found lately, that I will be eating- and all of a sudden I can't turn the fork in my hand, so will actually have to use my other hand to make me let go of the fork, and then replace it in my hand so that I can use it. (My girlfriend laughed as she witnessed this the other day-- it was like I had to have two hands just to use the fork)--she was actually kindof scared, and asked me how long this has been going on.I'm hoping that by getting back on the Remicade, that this will stop and reverse itself like it did in the beginning of the clinical trial. It'll be the 22nd before I see the MD and get started either that Friday, or the following Monday.Love to all,Tracie~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2005 Report Share Posted July 16, 2005 I will, I see him the week after after next, and you know unless it's an emergency you can't get in sooner, I think I will be alright until then. Kim, don't overdue on your morning energy, have a great Saturday!! Marla -----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of NeuroSarcoid66@...Sent: Thursday, July 14, 2005 5:18 AMTo: Neurosarcoidosis Subject: Re: seizures Marla Maybe you should mention this to your Dr. just to be on the safe side? Take care, Kim NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2005 Report Share Posted July 16, 2005 I will, I see him the week after after next, and you know unless it's an emergency you can't get in sooner, I think I will be alright until then. Kim, don't overdue on your morning energy, have a great Saturday!! Marla -----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of NeuroSarcoid66@...Sent: Thursday, July 14, 2005 5:18 AMTo: Neurosarcoidosis Subject: Re: seizures Marla Maybe you should mention this to your Dr. just to be on the safe side? Take care, Kim NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 I did find a nurse and manage to say i wasnt feeling so well before it happend but only seconds before and had a very bad seizure or attack or whatever in front of everyone there. it was terrible, there really wasnt anyone around who spoke english and well it was one of the worst humiliating experiences of my life. Kim, Having a seizure isn't something to be ashamed of. I know you feel helpless, and it has to be so very scary when there is no one speaking your language. However-- "well, healthy" people don't have seizures. This is your illness--and the fact it's not under control. Honey, we know you're not putting on the "hysteronics" show-- this problem is real. It is a sign of just how potent the meningitis, the vasculitis, all caused by the sarcoidosis is. If you're going ot have a seizure, for crying out loud-- having it in the hospital in front of nurses and staff is a good thing-- they should have kept you there and run tests-- what better time. AARRRGHHHH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 I did find a nurse and manage to say i wasnt feeling so well before it happend but only seconds before and had a very bad seizure or attack or whatever in front of everyone there. it was terrible, there really wasnt anyone around who spoke english and well it was one of the worst humiliating experiences of my life. Kim, Having a seizure isn't something to be ashamed of. I know you feel helpless, and it has to be so very scary when there is no one speaking your language. However-- "well, healthy" people don't have seizures. This is your illness--and the fact it's not under control. Honey, we know you're not putting on the "hysteronics" show-- this problem is real. It is a sign of just how potent the meningitis, the vasculitis, all caused by the sarcoidosis is. If you're going ot have a seizure, for crying out loud-- having it in the hospital in front of nurses and staff is a good thing-- they should have kept you there and run tests-- what better time. AARRRGHHHH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2005 Report Share Posted September 18, 2005 I did find a nurse and manage to say i wasnt feeling so well before it happend but only seconds before and had a very bad seizure or attack or whatever in front of everyone there. it was terrible, there really wasnt anyone around who spoke english and well it was one of the worst humiliating experiences of my life. Kim, Having a seizure isn't something to be ashamed of. I know you feel helpless, and it has to be so very scary when there is no one speaking your language. However-- "well, healthy" people don't have seizures. This is your illness--and the fact it's not under control. Honey, we know you're not putting on the "hysteronics" show-- this problem is real. It is a sign of just how potent the meningitis, the vasculitis, all caused by the sarcoidosis is. If you're going ot have a seizure, for crying out loud-- having it in the hospital in front of nurses and staff is a good thing-- they should have kept you there and run tests-- what better time. AARRRGHHHH Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.