Hi, I got GBS back in october, it has been a confusing and very painful recover. I would really like to talk to some other members in this forum so I can compare experiences and how it "came on". I'm just still a little confused about the entire thing, I think my experience has probably been a little different. I'm on the tail end of it, getting rashes where my nerves are "waking up" and yeah it is a lot to deal with. Hope to hear from other members. with everybody a complete and painless recover.
Hello Timity
Very sorry to hear about your GBS, my brother is going through a severe case of GBS its been close to four months now, and he is still at the hospital trying to breathe by himself, paralyzed from his neck down with only a few finger and toes movements and with a feeding tube. but the good thing is that Doctors tells us that everything is gonna be fine at the end of the tunnel in which he is right now.
I hope you can recover from your GBS. Most people do. Keep positive.
Magaly
Hello Trinity,
GBS also struck me in October of 2013. Based on the circumstances following my annual flu shot, my doc seems to think that is what caused mine. Within two weeks of having a flu shot, I was already developing symptoms. I went to two doctors and an emergency room to no avail. By December 13, 2013 I was no longer able to walk. I wasn't diagnosed until Jan 2014 when a spinal tap revealed the culprit. I spent 9 days in the hospital and got the recommended 5 doses of IVIG IV treatments. By the middle of February 2014, I was able to walk again without a walker. I am now able to do laundry, dishes, cook small meals, light housework etc but I have not fully recovered. I am still numb from the knees down and the elbows down. I tire easily. I still cannot wear normal shoes and can only wear flip flops. I still cannot drive or work. I continue my own physical therapy but am not seeing any further progress. My neurologist is suggesting a maintenance round of IVIG IV treatments every 6-8 weeks but unfortunately I have no insurance and cannot afford them. I have filed for social security disability (I am 54) and was turned down. I have now hired an attorney to fight that for me. I have also hired an attorney to file a claim against the vaccination program. I was extremely healthy prior to my flu shot and there are many documented instances where the shot has caused GBS. I consider myself a lucky one though as my GBS was caught prior to it affecting my respiratory system. I don't know how long this fight is going to require but don't ever give up.
My GBS started in my legs and traveled up to my arms. The only things that I am dealing with still are numbness in all extremities, ankles that don't feel like they are working and balance issues. I have broken my toes twice now.
Hi Magaly
I was exactly like your brother. I spent 4.5 months in ICU on a ventilator and then 5 months in residential rehab. It was a really long process but after 2 years I was able to return to work and drive. Just remember - slow steps. Best of luck to your brother - he will improve. Lin />
Magaly Carrillo said:
Hello Timity
Very sorry to hear about your GBS, my brother is going through a severe case of GBS its been close to four months now, and he is still at the hospital trying to breathe by himself, paralyzed from his neck down with only a few finger and toes movements and with a feeding tube. but the good thing is that Doctors tells us that everything is gonna be fine at the end of the tunnel in which he is right now.
I hope you can recover from your GBS. Most people do. Keep positive.
Magaly
Hi Timity,
I am 3 1/2 years after my GB started. Mine was Miller-Fisher variety which as I understand means it starts from head and goes down. I had various problems prior to onset: severe cold sensitivity in my mouth and hives that required prednisone. Anyway, a day after having a delightful kayak trip, I came down with persistent double vision. The next day I also became unable to walk. I went to the hospital and left it about 3 weeks later after getting IVIG and diagnosis and biopsy of a cancerous brain tumor that was discovered by the brain MRI.
I was transferred to a rehab/nursing home and had speech, occupational and physical therapy. Friends took turns staying all night with me. That helped in so many ways as my halucinations/delusions were worse at night. I had 3 more weeks of intense physical therapy at another facility where I got strong enough to go home.
I continue to have muscle type pain and cramping of my back. I try to be as active as I can. Fatigue is a bother, but I'm fortunate enough to fit rest periods in with my lifestyle.
My loving husband, my faith,caring family and friends have helped me so much!
It seems that all GB folks have a different story,but the common denominator of hope.
Take care,
Molly
Molly said:
Hi Timity,
I am 3 1/2 years after my GB started. Mine was Miller-Fisher variety which as I understand means it starts from head and goes down. I had various problems prior to onset: severe cold sensitivity in my mouth and hives that required prednisone. Anyway, a day after having a delightful kayak trip, I came down with persistent double vision. The next day I also became unable to walk. I went to the hospital and left it about 3 weeks later after getting IVIG and diagnosis and biopsy of a cancerous brain tumor that was discovered by the brain MRI.
I was transferred to a rehab/nursing home and had speech, occupational and physical therapy. Friends took turns staying all night with me. That helped in so many ways as my halucinations/delusions were worse at night. I had 3 more weeks of intense physical therapy at another facility where I got strong enough to go home.
I continue to have muscle type pain and cramping of my back. I try to be as active as I can. Fatigue is a bother, but I'm fortunate enough to fit rest periods in with my lifestyle.
My loving husband, my faith,caring family and friends have helped me so much!
It seems that all GB folks have a different story,but the common denominator of hope.
Take care,
Molly
Igot gbs just after my 50th birthday in 2001. I had ivig treatments. A lot of pain and fatigue. I wasn’t walking or talking for a short while. Now, so many yrs. Later I am pretty good, but I have some paralysis in my face, not visible to others, I get tired a lot but I am here, I travel and I enjoy life. It sounds like u are one of the lucky ones. I consider myself lucky as I am breathing, walking and talking on my own unlike others with gbs. Good luck. Jennifer
Hi, I am sorry this has hit you too. I am new here also. I went to 5 ERs at 2 different hospitals. Severe pain in my back between my shoulder blades and was acting a little slower than I normally would. My husband thought I was having another TIA. (had 1 in 2010). The first ER dr. said I had misused my meds. Wrong! 2nd ER Dr did a CAT Scan and said pinched nerve and I was sent on my way with a few days of pain pills. 3rd same thing, 4th said my labored breathing was causing me the pain. 5th I was admitted for the night and released the new morning with a pain patch and some anti-inflammatory meds. Went home in a wheelchair. Got up the next morning and rolled to my living room moved to the recliner. I had a cup of coffee. The next thing I knew was my son saying Mom put your arms around my neck I need to help to the wheelchair to go to the hospital. At this time they could not get a BP reading on me. I slid off my recliner and into the floor. I was hollering for my son, he was right in front of me but I was blind. My son, 2 daughters, and hubby was there. They said I was just hollering for all of them and my Mom (passed in '81) They call the ambulance and off we go again. My son was with me an he said when they asked a question I would answer right, but he knew I wasn't really wasn't there. When the dr asked how I was before, my son said she is just getting over double pnemonia. My BP was being brought up with a pick line in my groin area as well as IV in both arms. I was in and out of concious when the Dr heard that she said she needed to do a spinal tap. Then I was transferred by ambulance to a large hospital in Dallas Tx. I was in ICU for a week and also recieved the IVIG treatment. My sight came back quickly, my pain was still really bad. After the 4th bag I started getting better and was getting back in my right mind. I spent another week in the main part of the hospital and was then sent to rehab for a week. I went home with a list of PT/OT exercises, still in a wheelchair for distance but up on a walker in the house. Within 2 weeks of exercises I was able to move around in the house with a cane. My daughter has CP (age 30) and still lives with us. My house is has a accessable kitchen and bath room. She had fun making me do the exercises after all the years I made her do them. After 5 weeks I am walking without help. I still have a 5" strip in my back that hurts. I had to change the style of bra, because I couldn't handle the hooks touching me and couldn't lean back in a chair. My hands are still numb and tingly. The rest of my body feels like I am getting an electrical charge. My right thigh and my feet hurt the most. I take 1200 mg of Gabapentin 3 times a day. That really helps. I have cut my pain pills from 8 a day to 1/2 twice a day. In the beginning I couldn't raise my eyebrows or smile. All of that has came back to normal. When I get really tired my earlobes tingle. I feel if I keep on pushing I will be back to where I was before. All I can say is keep trying and have faith. I feel I am so blessed that I am doing well. It didn't hit my respitory system and was caught so early. I really hope and pray that you will recover soon. Stay strong!!! Good Luck!!!
I really feel for all of you. Mine seen to come in different phases, and its weird because everything is working in the opposite way it came in. I feel like im waking up out of a walking ten month coma. Unfortunately me for me i was in a nrw area when it came on for me so i got very isolated and scared and im a grown man. I got a pretty bad story but i dont think i was nearly as bad as some others got but watching the numbness and neuropathy go away i understand now.
I was admitted to hospital with GBS on June 5th, 2012. I had been to 2 ER’s and my Family Dr. They had no clue. By this time I was paralyzed. I couldn’t do anything much. I could not write my name, feed myself, brush my teeth, could not walk, turn myself over in bed and had lost control of my bodily functions. After MRI, Spinal tap and some other tests, I was diagnosed with GBS. I received the 5 IVIG transfusions and was moved to another hospital to have the Plasma Pharesis. The new neurologist thought that I was beginning to respond to the IVIG treatments and put me in a regular room for observation and began light therapy. I was sent to a Skilled Nursing Home and Rehab facility. It was a horrible experience which I will not go into now. Long story short, I ended up with a fistula and had to have surgery and ended up with a colostomy bag. A week later I was sent to another rehab facility that was great but was short term and I could only stay 16-18 days. I was not ready to return home at that time. I still was unable to walk. So I was sent to yet another rehab facility . . .The Memphis Jewish Home and Rehab. After I adjusted, it was a great place and I slowly began to make progress. After a total of 4 1/2 mos., I finally got back home. Instll have numbness in my lower legs and feet. They swell and are very tight. My balance is not good and I tire easily. I use a cane when I go out and still use my walker one in the house. I am afraid of falling. It has been a long bumpy road, but I am so much better than I was 2 yrs. ago. Don’t give up! I did out-patient therapy foa a year then fitness therapy for another 6 mos. I really need to go back I guess. Don’t know if I will ever be back where I was, But I can live with it. The main thing is attitude! Don’t give up and keep trying.