Guillain-Barré Syndrome (GBS) Support Group
Guillain-Barré syndrome (GBS), is an acquired immune-mediated inflammatory disorder of the peripheral nervous system (i.e. not the brain or spinal cord). It is suggested that it is an autoimmune disease, in which the sufferer's immune system is triggered into damaging the nerve covering. Many cases developed in people who received the 1976 swine flu vaccine.
Hello! My doctor and I are trying to sort out a medical mystery which landed me in the hospital this past June. I have a condition called Secondary Intracranial Hypertension, (My body produces more Cerebral Spinal Fluid (CSF) than it can drain off causing high pressure with CSF literally squeezing my brain and spinal cord). There is currently no cure for Secondary IH, but, in an effort to aid my symptoms, in 2009 I underwent brain surgery to have a VP shunt placed for CSF drainage. This has helped some, but, I am still on disability.
Then in June, I began having some large memory lapses. They got worse and worse and I wasn't feeling well. I lost my appetite and couldn't eat much besides popsicles. My hands and feet would tingle and felt like they were "falling asleep" all the time. For three days, I slept constantly. My husband said he would come in and speak to me, or bring me something to eat, but, I would just go back to sleep and to date I have no memory of these days with the exception of waking up with severe nerve pain in my right thigh that woke me up at least once during each of these days. On the fourth day, I was awake, but, noticed that the outside of my right thigh was completely numb and I felt like something was really wrong. I was very concerned that I couldn't remember anything. I had some chest and kidney pain (lower back pain), but, just laid down and went back to sleep. The next morning my husband went to wake me and when I went to sit up my entire body fell weak...like rubber. I got very nauseous and felt like I was going to vomit. Next thing I knew my entire body was paralyzed and I was speaking gibberish. I couldn't speak my own name and kept falling asleep. I had difficulty swallowing and time moved very fast. The pain in my legs felt like a burning, stinging pain to the point that I couldn't even put a sheet over me. My husband called the squad and when I arrived at the ER, without any testing they initially told my husband they were just sending me home. My bp was higher than ever along with my heart rate and I was still paralyzed. My head was killing me and my neck was stiff. My husband got very angry and told the doctor..."How am I supposed to get her home? She can't walk and you haven't given us a diagnosis or done anything to help her." Unbeknownst to us, they put me on a psych ward!!!!! That evening I began having seizures and my pain continued to worsen. Still no tests. Initially, they said they suspected Guillian Barre Syndrome, but, then said they ruled it out....problem is....we don't know how as they never did a spinal tap, MRI, blood work, nerve conduction studies or an EEG! They had to catheterize me because I could not feel the need to urinate. I could not sleep either because the pain was so great. I eventually found out that I had a really bad UTI, I was given potassium for my heart and bp and eventually some antibiotics....but, still couldn't eat. I lost 15 pounds in 10 days. The seizures lasted 3 days, the weakness lasted for a month and I couldn't eat well for at least 3 weeks. To this day, I still have residual neuropathy in my thigh and worsening headaches. The burning in my legs is worse some days than others. I also have occasional chest and kidney pain. Historically, I have had mononeucleosis and twenty years later the Epstein Barr virus. My mother has MS and my aunt has RA. When I was released from the hospital the diagnosis read: "Conversion Disorder"!!!! Conversion is a psychological disorder that affects only .001% of the population and typically occurs only after an incredibly traumatic event (i.e. Parent's death, lost limb in the war, just got in a traumatic car accident). I had not experienced such an event. Additionally, a Psychiatrist must make the diagnosis. I was diagnosed by a medical Nurse Practitioner. And, the treatment for conversion is psychiatric therapy....which was not recommended for me. But, to ensure that I did get evaluated I sought the help of a pain psychologist who said that I absolutely do not have conversion disorder! She said, I do need to get my record cleared up though because even if I had a heart attack tomorrow and sought medical help....with this on my record I wouldn't get any help. They'd probably let me die! For those of you who have GBS....Does any of this sound familiar? Any advice? Thank you.
MM3
Then in June, I began having some large memory lapses. They got worse and worse and I wasn't feeling well. I lost my appetite and couldn't eat much besides popsicles. My hands and feet would tingle and felt like they were "falling asleep" all the time. For three days, I slept constantly. My husband said he would come in and speak to me, or bring me something to eat, but, I would just go back to sleep and to date I have no memory of these days with the exception of waking up with severe nerve pain in my right thigh that woke me up at least once during each of these days. On the fourth day, I was awake, but, noticed that the outside of my right thigh was completely numb and I felt like something was really wrong. I was very concerned that I couldn't remember anything. I had some chest and kidney pain (lower back pain), but, just laid down and went back to sleep. The next morning my husband went to wake me and when I went to sit up my entire body fell weak...like rubber. I got very nauseous and felt like I was going to vomit. Next thing I knew my entire body was paralyzed and I was speaking gibberish. I couldn't speak my own name and kept falling asleep. I had difficulty swallowing and time moved very fast. The pain in my legs felt like a burning, stinging pain to the point that I couldn't even put a sheet over me. My husband called the squad and when I arrived at the ER, without any testing they initially told my husband they were just sending me home. My bp was higher than ever along with my heart rate and I was still paralyzed. My head was killing me and my neck was stiff. My husband got very angry and told the doctor..."How am I supposed to get her home? She can't walk and you haven't given us a diagnosis or done anything to help her." Unbeknownst to us, they put me on a psych ward!!!!! That evening I began having seizures and my pain continued to worsen. Still no tests. Initially, they said they suspected Guillian Barre Syndrome, but, then said they ruled it out....problem is....we don't know how as they never did a spinal tap, MRI, blood work, nerve conduction studies or an EEG! They had to catheterize me because I could not feel the need to urinate. I could not sleep either because the pain was so great. I eventually found out that I had a really bad UTI, I was given potassium for my heart and bp and eventually some antibiotics....but, still couldn't eat. I lost 15 pounds in 10 days. The seizures lasted 3 days, the weakness lasted for a month and I couldn't eat well for at least 3 weeks. To this day, I still have residual neuropathy in my thigh and worsening headaches. The burning in my legs is worse some days than others. I also have occasional chest and kidney pain. Historically, I have had mononeucleosis and twenty years later the Epstein Barr virus. My mother has MS and my aunt has RA. When I was released from the hospital the diagnosis read: "Conversion Disorder"!!!! Conversion is a psychological disorder that affects only .001% of the population and typically occurs only after an incredibly traumatic event (i.e. Parent's death, lost limb in the war, just got in a traumatic car accident). I had not experienced such an event. Additionally, a Psychiatrist must make the diagnosis. I was diagnosed by a medical Nurse Practitioner. And, the treatment for conversion is psychiatric therapy....which was not recommended for me. But, to ensure that I did get evaluated I sought the help of a pain psychologist who said that I absolutely do not have conversion disorder! She said, I do need to get my record cleared up though because even if I had a heart attack tomorrow and sought medical help....with this on my record I wouldn't get any help. They'd probably let me die! For those of you who have GBS....Does any of this sound familiar? Any advice? Thank you.
MM3
I am new to this site, but not new to this awful disease.
In my limited research I have learned that it can strike from anywhere. From the feet first, in my case, to the head- Miller Fischer. To the mid body.
What struck me with your case was that I have a sister with RA.
Are you, or were you, a stressed person in everyday life. I was a maybe still am. I do think there is a link.
Caleb