My name is Ayut. I'm Thai and 27 years old. When I was a student in the U.S., I was diagnosed as having GBS on August 10th. Now, I'm back in Thailand. At that time, my arms and legs did not have energy or power at all. Even though I did not need to stay in an ICU nor need an artificial ventilator, I felt the numbness throughout my whole arms and legs, including my waist. Then, I got the IVIg for 5 days. After that everything was getting better and better. The numbness was cut down only in the palms and feet's areas. However, the situation was getting worse again in the week 3 after I got the IVIg. The numbness was moving towards up from my feet and arms to my knees and elbows respctively, but not so far. Also, I could not move my toes and ankles much, and I could not stand on my toes and heels even thought I could do so during the first or second week after I received the IVIg. Probably, I tried to work out too much to recover my muscles. I don't know it this the problem or not. Or I drank beer and wine for 2 days, but not too much. Or the cold weather is not good for GBS. etc. (I have no idea for this)
So far, I have met three neurologists and they said the same that I would return to be (at least 80%) normal within 3-4 months. However, it's has been almost 2 months for me with the GBS. I don't know how long it will last.
So, if I don't feel better or I feel worse, what should I do next? Does any body have any valuable information for me? Does the second IVIg work for me? Except IVIg and PE, what kind of medication should I take? What kind of food will help my body heal itself? What kind of excercises should I do? (Now, I have to go to a hospital to do my physical therapy) (and I go swimiming sometimes) Is it normal to feel soar in the back as a result of GBS? (I have felt for 2-3 months)...etc...
Wednesday, January 20, 2010
no Diagnosis
The good news is that my son is improving. The bad news is that after a week at a Children's hospital and 3 weeks of follow up visits, they still have no idea.
He had a sudden onset of weakness and sensation loss on November 22nd. He woke up that morning with what we thought was severe heart burn and he looked ill. We were at a hotel at the time for a hockey tournament he played in.
He continued to feel sick and said that his legs felt weak. We had a doctor who is a team parent look at him and told him to take an advil and a pepsid. They said to have him warm up with the team and see how he feels. When he went out on the ice, he was teary and looked scared. He has never missed a game for illness so I just thought he was upset. He was walking fine at the time.
When he went to skate, he could barely stand up. My husband (who is his coach) had him come and sit on the bench for the game. After the game, he went out to shake hands and collapsed on the ice. He was carried off and evaluated by an ER doctor and a paramedic who were in the audience. He had some hits (nothing unusual) in his hockey game the day before. They did not feel there was any spinal trauma but that he had proximal hip weakness and had us go to the hospital near the rink (90 miles from our home). They did CT scan of the head and an MRI of the lumbar spine and they were normal. The doctor thought it looked more like a neurological disease than an injury and sent us to a Children's hospital near our home in Denver. Once he got his skates off, he could walk in an unsteady way to the hospital but 3 hours later, he could not even hold any weight on his legs.
When we got to Denver, they did a spinal tap and blood work that were normal. He could still sit normally and move his legs when laying down at that time. In the morning, he woke up and he could no longer move his legs at all. He had also become incontinent of urine over night.
They did EKG's, Chest X-Ray, MRI's of the head, neck, mid back and re-read the lumbar and sacral spines. All were negative. He had normal deep tendor reflexes for his entire stay as well. By that afternoon, he could no longer sit on his own and could not feel sharp/dull and hot and cold below his belly button. He could tell he was being touched but it was number than above. The, about 36 hours after it all started, he began moving his legs in bed and has made steady imrpovement since.
So they pretty much felt they ruled out GBS, the actually felt he had a psychiatric conversion disorder. Then, they did more testing on his bladder and realized he had a neurogenic bladder and that he could not have a conversion disorder.
We were discharged catheterizing him every 4 hours because he could pee but had a lot left in his bladder when he was done. We are still doing this but now only twice a day and his left over urine is getting just about normal now. He is now also getting wet in a pull up at night which he has not done since he was 3.
I am a physical therapist and wanted them to do an EMG in the hospital but they did not feel it was needed. Then they decided to do one this past Friday and it was normal. Of course, he is at almost normal strength now so I am not sure how helpful it would be. They never repeated the spinal tap after the first night this started.
So, he left the hospital walking with a walker and over the course of the 3 weeks since then he is now walking on his own, walking up and down stairs slowly and the bladder /muscle/sensation has improved over the 3 week period in a steady manner. He still can't run, jump etc. His calves are weak and his glut muscles. I do PT with him at home (imagine the poor kid with a PT for a mom!) and goes to a colleague once a week.
The doctors now want to go with the idea that he had a spinal cord injury during the hockey game the day before even though all MRI's were normal, even one taken 1 week later. He never had signs up central nervous system problems like spasticity, hyper reflexes etc. so I don't understand the latest diagnosis. They said that people with unusual (and mild) forms of GBS do not have bladder problems but the urologist today said they often do.
We are at a loss here. We are thrilled he is getting better. They never treated him with IVIG, steroids, etc. We just don't know how to plan for his future and how to possibly prevent this without a diagnosis. Does anyone have any thought given your backgrounds and any suggestions about what we should do next. I did ask his doctors if we should let him get flu shots and they all hesitated to say yes.
I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendon reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.
He had a sudden onset of weakness and sensation loss on November 22nd. He woke up that morning with what we thought was severe heart burn and he looked ill. We were at a hotel at the time for a hockey tournament he played in.
He continued to feel sick and said that his legs felt weak. We had a doctor who is a team parent look at him and told him to take an advil and a pepsid. They said to have him warm up with the team and see how he feels. When he went out on the ice, he was teary and looked scared. He has never missed a game for illness so I just thought he was upset. He was walking fine at the time.
When he went to skate, he could barely stand up. My husband (who is his coach) had him come and sit on the bench for the game. After the game, he went out to shake hands and collapsed on the ice. He was carried off and evaluated by an ER doctor and a paramedic who were in the audience. He had some hits (nothing unusual) in his hockey game the day before. They did not feel there was any spinal trauma but that he had proximal hip weakness and had us go to the hospital near the rink (90 miles from our home). They did CT scan of the head and an MRI of the lumbar spine and they were normal. The doctor thought it looked more like a neurological disease than an injury and sent us to a Children's hospital near our home in Denver. Once he got his skates off, he could walk in an unsteady way to the hospital but 3 hours later, he could not even hold any weight on his legs.
When we got to Denver, they did a spinal tap and blood work that were normal. He could still sit normally and move his legs when laying down at that time. In the morning, he woke up and he could no longer move his legs at all. He had also become incontinent of urine over night.
They did EKG's, Chest X-Ray, MRI's of the head, neck, mid back and re-read the lumbar and sacral spines. All were negative. He had normal deep tendor reflexes for his entire stay as well. By that afternoon, he could no longer sit on his own and could not feel sharp/dull and hot and cold below his belly button. He could tell he was being touched but it was number than above. The, about 36 hours after it all started, he began moving his legs in bed and has made steady imrpovement since.
So they pretty much felt they ruled out GBS, the actually felt he had a psychiatric conversion disorder. Then, they did more testing on his bladder and realized he had a neurogenic bladder and that he could not have a conversion disorder.
We were discharged catheterizing him every 4 hours because he could pee but had a lot left in his bladder when he was done. We are still doing this but now only twice a day and his left over urine is getting just about normal now. He is now also getting wet in a pull up at night which he has not done since he was 3.
I am a physical therapist and wanted them to do an EMG in the hospital but they did not feel it was needed. Then they decided to do one this past Friday and it was normal. Of course, he is at almost normal strength now so I am not sure how helpful it would be. They never repeated the spinal tap after the first night this started.
So, he left the hospital walking with a walker and over the course of the 3 weeks since then he is now walking on his own, walking up and down stairs slowly and the bladder /muscle/sensation has improved over the 3 week period in a steady manner. He still can't run, jump etc. His calves are weak and his glut muscles. I do PT with him at home (imagine the poor kid with a PT for a mom!) and goes to a colleague once a week.
The doctors now want to go with the idea that he had a spinal cord injury during the hockey game the day before even though all MRI's were normal, even one taken 1 week later. He never had signs up central nervous system problems like spasticity, hyper reflexes etc. so I don't understand the latest diagnosis. They said that people with unusual (and mild) forms of GBS do not have bladder problems but the urologist today said they often do.
We are at a loss here. We are thrilled he is getting better. They never treated him with IVIG, steroids, etc. We just don't know how to plan for his future and how to possibly prevent this without a diagnosis. Does anyone have any thought given your backgrounds and any suggestions about what we should do next. I did ask his doctors if we should let him get flu shots and they all hesitated to say yes.
I know they are doing their best and are frustrated as well. I was just curious if anyone had thoughts about his case and if mild GBS can have normal LP (done right after onset) and deep tendon reflexes. Whatever he has is a rare form of something so we are just looking to others to help. We would like to get a second opinion as well. If anyone has suggestions from GBS experts, that would be great.
Immune complication?
my name is Steven and I am new to the board! I had GBS back in the summer of 2005 and made a full recovery.....at least my nerves did. So heres my problem. Ever since I had GBS I have been very sick. When I say sick, I don't mean the residual fatigue or peripheral nerve systems that persist after GBS, I mean sick as in feeling like I constantly have the flu, bad.
It started when I was towards the end of my recovery which was about 5 months after my diagnosis. I started to notice that I was feeling tired a lot and getting strange headaches. At my last appointment with the Neurologist that over saw my care in the hospital(which was December of 2005), she noticed that my lymph nodes on my neck had swelled significantly, but felt that it could be nothing aslong as they went back to normal. In 2006 I went back to college and the symptoms began to progress. The heachaches became more intense and I started to feel dizzy and lightheaded all the time. I started to get aches and pains as if I have the flu and the fatigue turned into a fatigue that you get when you have an infection or a viral illness. The lymph nodes did not go down and have actually grown a little more and have become tender. So overall the feeling is like im constantly fighting an infection and it has been going on since I had GBS. I know it is not my nerves as I have had exams and the Neurologist that over saw my care was sure it wasn't any residual and I am also confident that I don't have any residual nerve damage and these symptoms are not consistant with the residual symptoms I always hear about.
My concern is that the problem may be in the immune system because as we know, GBS at its heart is an Immune Dysfunctional disease. Studies I have come across have shown immune abnormalities during teh course of GBS such as low NK cell function, but showed to be restored after the treatment with IVIG. The problem is that I never received any treatment because I was diagnosed too late and the damage to my nerves was already done. I am also aware that the hospital where I was admitted used someof my blood samples to look for infections for research purposes. My guess is that one of three things is happening:
1. I am still fighting teh infection that triggered the GBS.
2. I have some rare immune complication of GBS or something to that extent.
3. I picked up something else while I was weak from teh GBS and just have been unable to fight it off completely.
Does anyone have any info at all? Studies? Similar experience? Solution? I would really appreciate it. I have been very sick and continue to get worse and it has been 4 years since GBS so needless to say, I am ready to feel good again. I do plan on contacting the Neurologist that took care of me before when I had GBS so we'll see. Thank you everyone and for those out there dealing with GBS or any residual symptoms, keep going and take care of yourself, your body CAN recover.
It started when I was towards the end of my recovery which was about 5 months after my diagnosis. I started to notice that I was feeling tired a lot and getting strange headaches. At my last appointment with the Neurologist that over saw my care in the hospital(which was December of 2005), she noticed that my lymph nodes on my neck had swelled significantly, but felt that it could be nothing aslong as they went back to normal. In 2006 I went back to college and the symptoms began to progress. The heachaches became more intense and I started to feel dizzy and lightheaded all the time. I started to get aches and pains as if I have the flu and the fatigue turned into a fatigue that you get when you have an infection or a viral illness. The lymph nodes did not go down and have actually grown a little more and have become tender. So overall the feeling is like im constantly fighting an infection and it has been going on since I had GBS. I know it is not my nerves as I have had exams and the Neurologist that over saw my care was sure it wasn't any residual and I am also confident that I don't have any residual nerve damage and these symptoms are not consistant with the residual symptoms I always hear about.
My concern is that the problem may be in the immune system because as we know, GBS at its heart is an Immune Dysfunctional disease. Studies I have come across have shown immune abnormalities during teh course of GBS such as low NK cell function, but showed to be restored after the treatment with IVIG. The problem is that I never received any treatment because I was diagnosed too late and the damage to my nerves was already done. I am also aware that the hospital where I was admitted used someof my blood samples to look for infections for research purposes. My guess is that one of three things is happening:
1. I am still fighting teh infection that triggered the GBS.
2. I have some rare immune complication of GBS or something to that extent.
3. I picked up something else while I was weak from teh GBS and just have been unable to fight it off completely.
Does anyone have any info at all? Studies? Similar experience? Solution? I would really appreciate it. I have been very sick and continue to get worse and it has been 4 years since GBS so needless to say, I am ready to feel good again. I do plan on contacting the Neurologist that took care of me before when I had GBS so we'll see. Thank you everyone and for those out there dealing with GBS or any residual symptoms, keep going and take care of yourself, your body CAN recover.
fight diseases!
You have to search very hard to find it on the CDC website, first going to the link for "Healthcare Providers", then buried deep within an article (nearly at the end of it) for healthcare providers entitled: "2009 H1N1 Influenza Vaccine and Pregnant Women:Information for Healthcare Providers" is the sentence:
"Persons who have previously had GBS should not receive influenza vaccine."
This is the end sentence to a section entitled: "Is the 2009 H1N1 flu vaccine expected to be associated with Guillain-Barre Syndrome (GBS)?"
Here is the link to the article: http://www.cdc.gov/h1n1flu/vaccination/providers_qa.htm
Very surprised that the foundation is not up on this info, although it is difficult to find on the CDC website. Checking under info for healthcare providers and then finding the info that GBS survivors should NOT receive influenza vaccine (doesn't even make the distinction between H1N1 vaccine and "regular" influenza vaccine) buried in an article regarding pregnant women and the vaccine......not exactly the route most of us would take to find this very pertinent information.......
The title on the website itself says: CDC:Centers for Disease Control and Prevention:"Your online source for Credible Health Information".
best wishes for good health to all,
"Persons who have previously had GBS should not receive influenza vaccine."
This is the end sentence to a section entitled: "Is the 2009 H1N1 flu vaccine expected to be associated with Guillain-Barre Syndrome (GBS)?"
Here is the link to the article: http://www.cdc.gov/h1n1flu/vaccination/providers_qa.htm
Very surprised that the foundation is not up on this info, although it is difficult to find on the CDC website. Checking under info for healthcare providers and then finding the info that GBS survivors should NOT receive influenza vaccine (doesn't even make the distinction between H1N1 vaccine and "regular" influenza vaccine) buried in an article regarding pregnant women and the vaccine......not exactly the route most of us would take to find this very pertinent information.......
The title on the website itself says: CDC:Centers for Disease Control and Prevention:"Your online source for Credible Health Information".
best wishes for good health to all,
This is from the MMWR report which is the official recommendation of the Advisory Committee on Immunization Practices (ACIP) regarding seasonal influenza. The report is 52 pages long and earlier in it, it says that the risk of getting GBS from the flu is about 4-7 times greater than getting it from the flu vaccine. It is also worth noting that almost everywhere on the CDC, it states that if you got GBS within 6 weeks of a flu vaccine, you should discuss with your doctor whether to get the flu vaccine again.
"Use of TIV Among Patients with a History of GBS
The incidence of GBS among the general population is low, but persons with a history of GBS have a substantially greater likelihood of subsequently experiencing GBS than persons without such a history (ref. 232). Thus, the likelihood of coincidentally experiencing GBS after influenza vaccination is expected to be greater among persons with a history of GBS than among persons with no history of this syndrome. Whether influenza vaccination specifically might increase the risk for recurrence of GBS is unknown. Among 311 patients with GBS who responded to a survey, 11 (4%) reported some worsening of symptoms after influenza vaccination; however, some of these patients had received other vaccines at the same time, and recurring symptoms were generally mild (ref 247). However, as a precaution, persons who are not at high risk for severe influenza complications and who are known to have experienced GBS within 6 weeks generally should not be vaccinated. As an alternative, physicians might consider using influenza antiviral chemoprophylaxis for these persons. Although data are limited, the established benefits of influenza vaccination might outweigh the risks for many persons who have a history of GBS and who also are at high risk for severe complications from influenza.
MMWR (July 24, 2009) vol 58: 1-52. Prevention and Control of Seasonal Influenza with Vaccination: Recommendations of the Advisory Committee on Immunization Practices (ACIP)"
TIV is the inactivated (dead) influenza shot. Chemoprophylaxis means to use antiviral drugs to reduce the chance of getting influenza or to lessen the severity of the illness. In English, the main point is that if one if not at a high risk of complications from the flu (such as pregnant people, people with serious heart or lung diseases, etc) AND if you got GBS within 6 weeks of getting a flu vaccine, it is generally recommended by this committee that you not get the flu vaccine. People with a higher risk of getting very ill after the flu (such a serious chronic lung disease, etc) probably should get the vaccine to help keep them safe from the serious illnesses associated with the flu, although each person is different.
WithHope for a cure of these diseases.
"Use of TIV Among Patients with a History of GBS
The incidence of GBS among the general population is low, but persons with a history of GBS have a substantially greater likelihood of subsequently experiencing GBS than persons without such a history (ref. 232). Thus, the likelihood of coincidentally experiencing GBS after influenza vaccination is expected to be greater among persons with a history of GBS than among persons with no history of this syndrome. Whether influenza vaccination specifically might increase the risk for recurrence of GBS is unknown. Among 311 patients with GBS who responded to a survey, 11 (4%) reported some worsening of symptoms after influenza vaccination; however, some of these patients had received other vaccines at the same time, and recurring symptoms were generally mild (ref 247). However, as a precaution, persons who are not at high risk for severe influenza complications and who are known to have experienced GBS within 6 weeks generally should not be vaccinated. As an alternative, physicians might consider using influenza antiviral chemoprophylaxis for these persons. Although data are limited, the established benefits of influenza vaccination might outweigh the risks for many persons who have a history of GBS and who also are at high risk for severe complications from influenza.
MMWR (July 24, 2009) vol 58: 1-52. Prevention and Control of Seasonal Influenza with Vaccination: Recommendations of the Advisory Committee on Immunization Practices (ACIP)"
TIV is the inactivated (dead) influenza shot. Chemoprophylaxis means to use antiviral drugs to reduce the chance of getting influenza or to lessen the severity of the illness. In English, the main point is that if one if not at a high risk of complications from the flu (such as pregnant people, people with serious heart or lung diseases, etc) AND if you got GBS within 6 weeks of getting a flu vaccine, it is generally recommended by this committee that you not get the flu vaccine. People with a higher risk of getting very ill after the flu (such a serious chronic lung disease, etc) probably should get the vaccine to help keep them safe from the serious illnesses associated with the flu, although each person is different.
WithHope for a cure of these diseases.
memory loss
Read your post and thought I would tell you that just yesterday,
when I got to work, after I logged in, I checked my mailbox, went to my room and looked around-my purse was no where in sight! I thought, "Oh I must of
left it in the lounge when I logged in!" Went back there, no purse! OMG I
thought, someone must have picked it up. After searching for several min.
my friend said did you leave it in your car? NO, I'm sure I brought it in! But
after the fifth time of walking in circles I decided to check my car. There it
was on the seat with my keys hanging out of it, and guess what, my door
was locked. After calling my husband and feeling like I just had another blonde moment, I told my friend that I was seriously getting worried about
not being able to remember anything lately and was wondering if it had to
do with my CIDP. I feel like I live in the state of perpetual confusion!!! You're
not alone my friend, sorry.
dont know, i cant remember......
im sorry its not funny, just trying to make u smile......
i find myself struggling sometimes to remember things, i ask people questions but dont really pay attention to the answer so i dont remember later, or phone numbers i once knew i draw a blank...... i hope u find the answers ur looking for
when I got to work, after I logged in, I checked my mailbox, went to my room and looked around-my purse was no where in sight! I thought, "Oh I must of
left it in the lounge when I logged in!" Went back there, no purse! OMG I
thought, someone must have picked it up. After searching for several min.
my friend said did you leave it in your car? NO, I'm sure I brought it in! But
after the fifth time of walking in circles I decided to check my car. There it
was on the seat with my keys hanging out of it, and guess what, my door
was locked. After calling my husband and feeling like I just had another blonde moment, I told my friend that I was seriously getting worried about
not being able to remember anything lately and was wondering if it had to
do with my CIDP. I feel like I live in the state of perpetual confusion!!! You're
not alone my friend, sorry.
dont know, i cant remember......
im sorry its not funny, just trying to make u smile......
i find myself struggling sometimes to remember things, i ask people questions but dont really pay attention to the answer so i dont remember later, or phone numbers i once knew i draw a blank...... i hope u find the answers ur looking for
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