Guillain-Barre Syndrome

my sister couldn't walk on her own legs independently from past 18 years when gbs affected her in 1994,she is able to move with help of support like wall,chair,stick but not normally ,she has been taking physiotherpy seesions for last 14 years without any improvement,she is 29 year old unmarried at present,need help from you guys about advice on treatment for paralysis of legs,she has improved from on bed to walker to stick but not became normal at all.Pls advice anything for her recovery.

I was only 3 1/2 years old when I was diagnosed with GBS. It was the Spring of 1977, my dad raced off road and we had been in Baja Mexico. I had gotten a virus and when we returned to Southern California my mom made the appointment for the Doctor. The morning of the appointment I remember being told, with my older sister by my side, to turn the television off so we could go in the car and as we walked down the hallway together there were 2 steps into the living room that I fell down. I stood up only to fall again. My sister turned the television off and ran to tell my mom that something wasn't right with her little sister. I was very young, so I don't remember very many details. My mom tells me that I couldn't walk at all by the time we arrived at the Doctor's office and we were sent to the hospital. At the hospital a Spinal tap reveled the GBS. I remember being in the hospital & all the blood draws...I hated needles and the nurses bribed me with frozen ice pops. I was paralyzed, my face began to hang and speech slurred, it was scary being away from home and not understanding what was happening. My parents didn't have medical insurance, my dad was self employed as a General Contractor and the Hospital sent me home after a week and they felt I wasn't in respiratory distress. They gave my mom some physical therapy instructions and told her there were no guarantees on what my recovery would be. I don't have the exact information but I know it was months of living on a cot that was kept in my parents room by night and moved to the living room for the day. I had terrible migraines and could barely have a pillow under my head in the early months. My mom says she worked with me daily moving my legs & feet trying to keep the muscles moving... I don't remember this. Her dedication and hard work paid off and I did regain the ability to walk again. So in medical terms I apparently had a full recovery. In my early years in school it was common to have my ankles give out on me many times and my legs would buckle under me. I never even knew that there was a possibility of any lasting effecting of GBS until recently. I'm 36, a mother to 4 children ages 14, 8, 6 1/2, & 4. The last couple of years have been very challenging for me. I have struggled with feeling tired since my 2nd pregnancy, I had some complications and anytime you bring a newborn into this world a mommy is bound to be tired :). Baby #3 came very quickly, so being tired seemed natural...and surprise, when baby #4 came, well you can only imagine. It was when my youngest was almost 2 that I realized the tired was something very different. I was suffering from extreme fatigue & muscle weakness. The muscle weakness was so severe that I couldn't stir wet dog food with the dry or my arm would give out trying to cook scrambled eggs. A few years prior I was able to hold my daughter as a toddler but now I wasn't able to hold my youngest son for more than a few minutes that I'd have to hand him off & my arms would be shaking with fatigue. Blow drying my hair for less than 10 minutes & again my arms are shaking. The fatigue would have me laying on the couch barely able to keep my eyes open, many times mid morning but definitely by 1pm. My calf muscles feel like they are on the verge of charlie horse cramps much of the time and frequently cramp up. I've also had my quad muscle cramp up too. I've been suffering from and was officially diagnosed with migraines in 2008. In March of 2010, I was diagnosed as having fibromyalgia, having failed miserably the touch point test having 16 of the 18 touch points...although, I do have a theory that it has something to do with my endocrine system not functioning properly. A Pituitary MRI 6/2010 shows a small pituitary tumor possibly causing havoc on some hormones. My ACTH and cortisol both tend to run low, as well as my aldosterone and renin. I have other symptoms like very dry/cracked hands & feet, body temp drops, sore joints, ovarian cysts, acid reflux/gerd, vision blurs. I guess my question is what is the long lasting effect of GBS on the individuals body? I've read that it can cause damage to the hypothalamus and pituitary, muscle cramping, migraines, fatigue and muscle weakness. It seems the doctors I see just don't know anything about GBS and look at me like I'm crazy. All I know is that I'm 36 and I should feel better. There's post polio syndrome, so who's to say there's not a post Guillain Barre Syndrome? I know for the individual that was in their 30's, 30 years later it might seem appropriate for them to have some muscle weakness or fatigue; but I was young when I had GBS, so 30 years later I'm trying to raise a family and weakness and fatigue is getting in the way, it's very obvious! I'm tired of the "oh, well you do have 4 kids..." I'm comparing to just a few years ago, I've been tired, this is different it's debilitating.

On June 1st my niece and I were attacked with a virus, on June 8 my husband was attacked with the same virus unknown by name. On June 15, 2009, my husband's hands began to tingle with pain. I took him to his HMO urgent care at 3AM on June 16th only to be told to see his regular doctor. June 16th at 1PM it moved to his feet and legs so I took him to my emergency hospital that I use for my medical and test were run which came out negative. The doctor said that he may have GBS but sent us home at 4:30PM. In less than 2 hours, my husband could not walk. After calling 911, getting him into my truck and back to the emergency hospital, he was diagnosed with GBS. By June 18 at 3am he had to be incubated on the respirator. GBS went all the way to his brain. The hemoglobin treatments did not work but the Plasamapheresis treatments did. His HMO transferred him 25 days later to another hospital that was a long term care facility, due to no contract with the hospital he was currently in. He got pneumonia while in ICU and the hospital that he was transferred to only gave him antibiotic treatments and refused to continue the plasmapheresis even though it was recommended and promised to be continued as a requirement. The primary doctor has never seen my husband or contacted myself regarding his treatments. Because my husband could not move, he was supposed to be turned every 2 hours. In the first hospital I had to always request a turning. When he was transferred, they found a serious bed sore on his lower back. The new facility did even worse and the bed sore got infected causing high fevers along with the pneumonia that also got worse. On July 24th he was moved to a regular room still on the breathing tube because the primary doctors P.A. thought he was stable enough. What really happened is that ICU needed the room. His bed sore got so bad that surgery was planned to remove the dead tissue. August 3rd 10 days later his kidneys began to slow their function. August 6th he was rushed back into ICU because his kidneys and other organs began to fail and on August 11th he died. I thought it was unlikely that one could die from this syndrome. I lost the love of my life in less that 58 days. From health to death. I was with him every day night and day he was only 62 years of age.
If anyone can offer advice based upon your experiences It would be welcomed. I believe that he was not treated correctly and there was maliciousness done. I have requested all of his records from both hospitals. I need a name of a good lawyer and a doctor who understands this syndrome who can review what treatments were done and what decisions should have been made by the doctors. I feel that my husband and I were cheated out of a long life together. We were friends for 25 years of which 5 were marriage. I reside in Southern California. Thanks

I am so relieved to have found this site. It is 4:00a.m. and I have been frantically searching for information on the recurrence of GBS. I was diagnosed with GBS 5 years ago. After 6 months of treatment I was cured, or so I thought. Lately, I have been experiencing pain in my legs and feet, but I have also been extremely active. I am 53 years old with a 15 year old son and have been trying to keep up; I chalked it up as being "sore", out of shape and just plain old aging. However, after a period of rest and conditioning the aches and pains do not get any better. I can not remember when I last slept for more than 3 hours at a time nor when I don't have achy legs and burning feet. Activities such as working absolutely leaves me exhausted, but a restful sleep refuses to follow.

I am uncertain if there is anything that I can do to relieve these symptoms, but would be grateful for any suggestions. I truly do not want to start the doctor cycle and am praying someone else has an answer.

Thanking anyone who may be able to assist me on my quest.

Four years ago (2005) my son had GBS. He was 16 years old at the time. We had all fallen ill with a gastrointestinal viral infection. Following a week or so later my son complained of weakness in his legs and said he couldn't focus well when driving his car. One night he had been out to dinner with a friend and couldn't get up the back steps to get in the house. I took him to the emergency room where he was diagnosed with Mono. The ER Dr told him that it was typical to be weak with mono. I brought him home and kept him downstairs on the couch to sleep that evening. The next morning I came out to see him sitting on the couch as he said "Mom I can't walk or even feel my feet". I rushed him to the doctor where he was diagnosed with GBS. He was transferred from a local hospital to Riley Children's Hospital in Indianapolis. By evening that same day he became paralysed to his waist. Over the next few days GBS worked its way up his body. He coudn't swallow, his face appeared as if he had a stroke, he couldn't see, or feel his arms, legs, or torso. Just as it had reached his lungs and breathing became more difficult, GBS finally peaked and began to reverse. After months of in patient and outpatient therapy, my son still suffers the residual effects of this disease. When he gets anything from a cold with the sniffles, to a viral infection he feels weak and his legs get tingly. I am writing today becasue yesterday we spent 4 hours in the ER where he was observed because he had the same sensation that he had when GBS hit him 4 years ago. Fatigue yes, fear yes, horrifying memories are there even though at 20 years old he tries to hide them. It is hard for people to understand, including health care workers; that the residual effects are realeven if you cannot see them. He had a CAT scan, x-ray, blood tests, cultures etc yesterday at the ER which all came back normal. I hope research will someday find a vaccine for GBS and find a cause for the residual effects and get it stopped. GBS may be a rare disorder but it seems to me that more and more people are getting it and we need to find a causeand then a vaccine to get it stopped. Thank you for reading and I hope this helps in a small way to anyone who has suffered GBS. My heart goes out to you and your family.