Guillain Barre Syndrome
My grandmother knows a woman who was older that had it and she spend 9 months in a nursing home before she fully recovered. My doctor is optimistic and seems to think that I'll recover in a few weeks. I'm not sure why he thinks that. It may have to do with my age. Who knows.
I did see a neurologist and he prescribed me Neurontin. When I saw him, he determined that it was Guillain Barre and he said at this point, we really just have to wait it out and let my body heal on it's own. He didn't feel that it was necessary to schedule any more appointments with him unless I'm having problems or something. Because my pain is starting to get worse, he has doubled my dose of Neurontin. I've only been doing that for a couple of days, so maybe I'll start seeing some improvement with the pain. My regular doctor also told me to double up on the Neurontin and prescribed some Lortab. The Lortab doesn't help much because I have to take such a low dose because my liver enzymes are so high.
I haven't noticed any signs of blood clotting, so far. But I do get around as much as possible every day. I am going back to work now. Very short hours, but I still get around some to get there. And I've been trying to work on the exercises my physical therapist gave me to do at home. I'll be starting hydrotherapy soon and I'm really keeping my fingers crossed. I do still try to get around, even though I have a difficult time, so some of the pain may be my own fault. I've had days where I know I've overdone it.
Thank you for your support as well. I really appreciate it. I'm really glad that I got some good responses from people here. I know I have people in my life that love and support me, but it's so good to hear from some people that have some experience or have some kind of idea of what it's like. Thank you so much.
I did see a neurologist and he prescribed me Neurontin. When I saw him, he determined that it was Guillain Barre and he said at this point, we really just have to wait it out and let my body heal on it's own. He didn't feel that it was necessary to schedule any more appointments with him unless I'm having problems or something. Because my pain is starting to get worse, he has doubled my dose of Neurontin. I've only been doing that for a couple of days, so maybe I'll start seeing some improvement with the pain. My regular doctor also told me to double up on the Neurontin and prescribed some Lortab. The Lortab doesn't help much because I have to take such a low dose because my liver enzymes are so high.
I haven't noticed any signs of blood clotting, so far. But I do get around as much as possible every day. I am going back to work now. Very short hours, but I still get around some to get there. And I've been trying to work on the exercises my physical therapist gave me to do at home. I'll be starting hydrotherapy soon and I'm really keeping my fingers crossed. I do still try to get around, even though I have a difficult time, so some of the pain may be my own fault. I've had days where I know I've overdone it.
Thank you for your support as well. I really appreciate it. I'm really glad that I got some good responses from people here. I know I have people in my life that love and support me, but it's so good to hear from some people that have some experience or have some kind of idea of what it's like. Thank you so much.
I will be praying for a speedy recovery!
Sandy
HW 225, SW 219, GW 140, CW 124
I can do all things through Christ who strengthens me!
i read your post earlier this morning but did not have time to post as i had my grandbabies here...sorry to have not been able to get back with you...
anyhow here is my familes story..my daughter now she is 23 but when she was like age 6 ish....had a sore throat, dr said it was strep throat, then like amonth or so later she all of a sudden was crawling up the stairs, would not run, ride a bike, would not really walk much either....my parents had been gone for like 4-6 weeks or so and when they came back, my mom said, you have to get ericka to the dr, she has the shakes, she would shake like she had parkensons...we had been taking her to the drs, but no one really said much..but with in a weeks time or so all of the above started and got worse, so i was getting very aggressive with the drs...one dr even stated in her medical records that (HE) thought there was sexual abuse had taken place...well at the time we were seeing base drs, and they had one lady that was a dr down town, that had been hired on to help since the base was so busy...we got to see her once, and she was like there is something wrong here... i want you to take her to a nerve specialist...well after some very expensive tests, they said that ericka had suffered a very mild case of...yeppers, you gussed it...Gullian Barre Syndrome...i was like what do you mean a mild case...the base sent her to physical therapy and at the time we were getting ready to move down to florida and the base had to make sure that base in florida was able to support her and care for her...well the dr down here in the physical thearpy was an expert in gullain barre syndome and the theaprist that was working with ericka was on TDY (temperory duty station) was from florida and would be her therapist down in florida...when he got back down to florida from montana...so it was a long haul, we finally got the sexual abuse taken out of her medical records as it was unfounded..but it was a torture of a month or so until we found out what was going on...and yes, the suggested that she spend alot of time in the pool swimming as that was the best thearpy at the time for her since she was on the rebound by the time we had found out what was going on....
now this was back in 1996 and we were told that her extremely fine motor skills may not return and she does not have good hand writing due to that fact, but she is alive and thriving and doing well...yes therapy was hard, but they did make it fun for her..she had to work on her balance alot and muscle strength...swimming helped alot on that...with the move to florida it was warmer here than montana for pool stuff...
we had heard all of the stories of how people ended up on ventalators because their brains could not get the message to the lungs and such to get them to breath...
i did go to my local health food store at the time and asked what to take for kids and their nerves to stimulate the nerve endings and such...and they suggested taking this milky stuff and we gave to my daughtger ever day and it tasted like yuck..but i just made sure she took it, i cant remember what it was as it was a long time ago...but perhaps look up nerve stimulation and see what herbs and such come up....once we knew for sure what was going on and we could start working on the treatment end of it, things did turn around pretty quickly...they had never seen a child so young come down with it so that is why it was so hard for them to diagonse it...
but keep you head up, scream if you need to, cry if you need to..but things will get better, they will get easier, the pain will go away...get in the pool as quickly as you can...i know it helped alot..get a hot tub if you can, you can do some of the smaller exercises in the warm water that way...but not swim...get some massages, it will help get the kinks out...i remember i would rub erickas feet and legs alot at the time...she would love to get lotion on after her bath..but i was doing alot of pressure massages which she did not know at the time, she just thought she needed alot of lotion...
anyhow, i feel for you, i totally understand how you are feeling, but yet not totally as i was on the other end of the stick with this one..but i just wanted to encourage you that it will get better with time...and for you to just have patience...
my daughter will be graduating from college in june with a bachelors in 3-D animation...she did have some trouble in school, but i homeschooled her thru all of her school years and high school, her extremely fine motor skills did not come back totally but she can do awesome things with the computer, even if she can not hand draw them with paper and pen...
hold onto gods hand at this time, and he will bring you thru the fire on the other side,
email if you like
[email protected]
have a blessed day and i will pray you feel better soon, sorry it took so long for me to get back with you, the day just got away like it does sometimes
debby
anyhow here is my familes story..my daughter now she is 23 but when she was like age 6 ish....had a sore throat, dr said it was strep throat, then like amonth or so later she all of a sudden was crawling up the stairs, would not run, ride a bike, would not really walk much either....my parents had been gone for like 4-6 weeks or so and when they came back, my mom said, you have to get ericka to the dr, she has the shakes, she would shake like she had parkensons...we had been taking her to the drs, but no one really said much..but with in a weeks time or so all of the above started and got worse, so i was getting very aggressive with the drs...one dr even stated in her medical records that (HE) thought there was sexual abuse had taken place...well at the time we were seeing base drs, and they had one lady that was a dr down town, that had been hired on to help since the base was so busy...we got to see her once, and she was like there is something wrong here... i want you to take her to a nerve specialist...well after some very expensive tests, they said that ericka had suffered a very mild case of...yeppers, you gussed it...Gullian Barre Syndrome...i was like what do you mean a mild case...the base sent her to physical therapy and at the time we were getting ready to move down to florida and the base had to make sure that base in florida was able to support her and care for her...well the dr down here in the physical thearpy was an expert in gullain barre syndome and the theaprist that was working with ericka was on TDY (temperory duty station) was from florida and would be her therapist down in florida...when he got back down to florida from montana...so it was a long haul, we finally got the sexual abuse taken out of her medical records as it was unfounded..but it was a torture of a month or so until we found out what was going on...and yes, the suggested that she spend alot of time in the pool swimming as that was the best thearpy at the time for her since she was on the rebound by the time we had found out what was going on....
now this was back in 1996 and we were told that her extremely fine motor skills may not return and she does not have good hand writing due to that fact, but she is alive and thriving and doing well...yes therapy was hard, but they did make it fun for her..she had to work on her balance alot and muscle strength...swimming helped alot on that...with the move to florida it was warmer here than montana for pool stuff...
we had heard all of the stories of how people ended up on ventalators because their brains could not get the message to the lungs and such to get them to breath...
i did go to my local health food store at the time and asked what to take for kids and their nerves to stimulate the nerve endings and such...and they suggested taking this milky stuff and we gave to my daughtger ever day and it tasted like yuck..but i just made sure she took it, i cant remember what it was as it was a long time ago...but perhaps look up nerve stimulation and see what herbs and such come up....once we knew for sure what was going on and we could start working on the treatment end of it, things did turn around pretty quickly...they had never seen a child so young come down with it so that is why it was so hard for them to diagonse it...
but keep you head up, scream if you need to, cry if you need to..but things will get better, they will get easier, the pain will go away...get in the pool as quickly as you can...i know it helped alot..get a hot tub if you can, you can do some of the smaller exercises in the warm water that way...but not swim...get some massages, it will help get the kinks out...i remember i would rub erickas feet and legs alot at the time...she would love to get lotion on after her bath..but i was doing alot of pressure massages which she did not know at the time, she just thought she needed alot of lotion...
anyhow, i feel for you, i totally understand how you are feeling, but yet not totally as i was on the other end of the stick with this one..but i just wanted to encourage you that it will get better with time...and for you to just have patience...
my daughter will be graduating from college in june with a bachelors in 3-D animation...she did have some trouble in school, but i homeschooled her thru all of her school years and high school, her extremely fine motor skills did not come back totally but she can do awesome things with the computer, even if she can not hand draw them with paper and pen...
hold onto gods hand at this time, and he will bring you thru the fire on the other side,
email if you like
[email protected]
have a blessed day and i will pray you feel better soon, sorry it took so long for me to get back with you, the day just got away like it does sometimes
debby
I am so sorry to hear that your daughter got it at such a young age. I couldn't imagine being a child and having something as horrible as this. The doctors said I had a very "mild case" as well. And I guess I did, since I didn't have to be put on a ventilator or anything. Right now, the thing that is killing me the most is the pain. My feet hurt so so bad that I just want to scream if anything at all touches them - even a blanket over them hurts so badly. The pain meds aren't really helping either. I don't get any sleep. I wake up crying almost every night because it hurts just that bad. And I have a pretty high pain tolerance. I think I could get through this a lot easier if I wasn't hurting so badly.
Thank you for getting back with me. I really do appreciate it. I'm trying very hard to stay positive and to get through this. I really appreciate your thoughts and prayers. Thank you so much.
Thank you for getting back with me. I really do appreciate it. I'm trying very hard to stay positive and to get through this. I really appreciate your thoughts and prayers. Thank you so much.
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