Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Dear Matt, First, you have no need to apologize.........that is what we are here for and you NEED to vent.......... I am so sorry is not doing well. I do know firsthand that being away from home for any reason, really wears me out and when I get tired, I get really confused. So I know it must be really hard for . Have you had a second opinion? Maybe there is some other meds that will work better for her. Sometimes it really takes a while and many different Doctors to get the right med. I know I went to MANY Doctors and it took over three years to get my diagnosis of Sarc. It is such a weird disease and attacks the body in so many different ways. My thoughts and prayers go out to both of you and I wish I could do more. Just know we are all here for you and you go ahead and VENT all you want to. Lots of hugs to both of you, DarleneNS Co-Owner/Moderator ----- Original Message ----- From: D. To: neurosarcoidosis Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Thanks. We are using Cellcept now for the sarc. and prednisone, Because of the seizure symptoms she had she is also on Lamictal & keppra. We have an appointment with the doctors in about a week and will discuss everything in person at that time. I just see a worsening progression. MattSubject: Re: Off LineTo: Neurosarcoidosis Date: Wednesday, January 20, 2010, 5:36 AM Dear Matt, First, you have no need to apologize... ......that is what we are here for and you NEED to vent........ .. I am so sorry is not doing well. I do know firsthand that being away from home for any reason, really wears me out and when I get tired, I get really confused. So I know it must be really hard for . Have you had a second opinion? Maybe there is some other meds that will work better for her. Sometimes it really takes a while and many different Doctors to get the right med. I know I went to MANY Doctors and it took over three years to get my diagnosis of Sarc. It is such a weird disease and attacks the body in so many different ways. My thoughts and prayers go out to both of you and I wish I could do more. Just know we are all here for you and you go ahead and VENT all you want to. Lots of hugs to both of you, DarleneNS Co-Owner/Moderator ----- Original Message ----- From: D. To: neurosarcoidosis@ yahoogroups. com Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Hi Matt, Here's maybe a why? Trips are very exhausting, even if you do nothing while your gone, they wear on you. I know when we go away, if I don't have a down day like every other day, I come home worn out. Pretty much the same, weak tired, very tired and disoriented, unable to think of words I want to say, etc... and I know that the Remicade is still working for me. It usually takes me 2-4 days of sleeping doing nothing to get back to semi normal, whatever that is. And by the way don't worry about Birthdays and things, just take care of your wife, your angel for doing that. I hope she recovers soon. I do find that while on any vacation have a down day where I pretty much sleep seems to work best. Your both in my thoughts and prayers. Marla Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Thanks. That seems to be what I am finding. Thanks for the good words. Matt Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I agree with the others. I went to see my mother, I drove 245 miles there. Took my time and stopped and had snacks and juice. I got there and we did the supper thing. Then I went to a motel with my 2 beautiful Granddaughters. Slept real well and the next day drove home. Here is the bad part. It took me two days of almost nothing but sleeping to recover. It was almost like starting over. I couldn't talk right, couldn't think and I had a real hard time walking again. I am back to normal (for me anyway). I know the next time I take a road trip it will happen again. My husband told me not to feel bad "it's legal". That is his way of saying go sleep and rest you deserve it. And I do. Prayers are with you. Take care of you and Jenney. Blessings Jackie Off Line Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I am afraid to go on a road trip. A day at my sons basketball tournament..thirty minute trip...is tiring and painful (offset by rewarding) Subject: Re: Off LineTo: Neurosarcoidosis@...Date: Wednesday, January 20, 2010, 9:24 PM I agree with the others. I went to see my mother, I drove 245 miles there. Took my time and stopped and had snacks and juice. I got there and we did the supper thing. Then I went to a motel with my 2 beautiful Granddaughters. Slept real well and the next day drove home. Here is the bad part. It took me two days of almost nothing but sleeping to recover. It was almost like starting over. I couldn't talk right, couldn't think and I had a real hard time walking again. I am back to normal (for me anyway). I know the next time I take a road trip it will happen again. My husband told me not to feel bad "it's legal". That is his way of saying go sleep and rest you deserve it. And I do. Prayers are with you. Take care of you and Jenney. Blessings Jackie Off Line Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Thanks to all for the information & the good words. I had not realized that this is what happens. I guess we are going to have to re-think some of these visits. Yes she did sleep a lot today, I am hoping that tomorrow will be better for her. Thanks again. MattSubject: Re: Off LineTo: Neurosarcoidosis Date: Wednesday, January 20, 2010, 10:24 PM I agree with the others. I went to see my mother, I drove 245 miles there. Took my time and stopped and had snacks and juice. I got there and we did the supper thing. Then I went to a motel with my 2 beautiful Granddaughters. Slept real well and the next day drove home. Here is the bad part. It took me two days of almost nothing but sleeping to recover. It was almost like starting over. I couldn't talk right, couldn't think and I had a real hard time walking again. I am back to normal (for me anyway). I know the next time I take a road trip it will happen again. My husband told me not to feel bad "it's legal". That is his way of saying go sleep and rest you deserve it. And I do. Prayers are with you. Take care of you and Jenney. Blessings Jackie Off Line Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 yes Bill, It is getting worse trying to get out on a trip. Sometimes just a trip to the grocery or the K-mart is a harrowing event. We just about get started and she cant continue due to weakness and I can see apprehensiveness set in.. We end up going home. So most times I run errands on my way home from work etc. Matt From: jackie <shadowme810@ verizon.net>Subject: Re: Off LineTo: Neurosarcoidosis@ yahoogroups. .comDate: Wednesday, January 20, 2010, 9:24 PM I agree with the others. I went to see my mother, I drove 245 miles there. Took my time and stopped and had snacks and juice. I got there and we did the supper thing. Then I went to a motel with my 2 beautiful Granddaughters. Slept real well and the next day drove home. Here is the bad part. It took me two days of almost nothing but sleeping to recover. It was almost like starting over. I couldn't talk right, couldn't think and I had a real hard time walking again. I am back to normal (for me anyway). I know the next time I take a road trip it will happen again. My husband told me not to feel bad "it's legal". That is his way of saying go sleep and rest you deserve it. And I do. Prayers are with you. Take care of you and Jenney. Blessings Jackie Off Line Finally getting back into reading posts. I apologize for being remiss on birthdays and saying hello. Been a rough patch here with , After a weekend trip to my brothers she came home weak & disoriented. At first I thought it was just being over tired, but now it seems to be more than that. Lately trips away from home are taking a tremendous toll on her. I am finding that her speech patterns are really bad and so is her mobility. Doctors say it is to be expected, but I keep asking why if the meds are supposedly working? Sorry I am venting, but does anyone have any suggestions regard to this. Thanks matt 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.