For the sake of full disclosure, I am a graduate student working on an assignment about chronic conditions and the various resources available for support and recovery. I am here to ask if anyone would be willing to share their story about GBS.
One of my friends has a father who was diagnosed with GBS while we were in high school. His diagnosis was made after what they thought was a congenital heart condition put him in the hospital, yet again, our senior year. In the years since, his condition has gone through a variety of hills and valleys. There have been many positive things that have come from his diagnosis- a growing understanding of the disease, some relief that there is a name for what he is experiencing, an outpouring of love and support from family and friends, and an ever-growing drive to continue to be successful at all things that he attempts.
If you would be willing to share on your experience, I would really appreciate it.
I am 62 years old and GB was diagnosed 4 1/2 years ago. I had the Miller-Fisher variety (I don't know what significance that has actually) A cancerous brain tumor was discovered when they were diagnosing me. I came near to needing intubation and was at the worst point nearly paralyzed. The first month was the most bizarre, as I had delusions. I got IVIG and after the tumor biopsy I got a full course of radiation. I also took a chemotherapy pill intermittently for several months. Physical therapy, OT, and counseling were so helpful. Learning to walk was frightening, I cried at one time when I first used a walker with stand-by help.
Currently, my biggest challenges are trying to stay strong and energetic, while resting as much as I need to. Water aerobics and walks with my cane daily if possible. I have pretty severe memory problems due to the brain radiation, but at least the tumor appears to be dead. I pray daily that I won't fall (4 falls in the last year and a half) The last fall caused my left are to break. I enjoy being a housewife and my husband is very patient and kind. We celebrated our first anniversary when I was in the rehab facility.
Disappointments are many as I can't play my banjo and guitar any more, nor ride a bike, hike in rugged terrain to name a few. I would prefer to think positively; for example I can continue to drive and be of use to my Mother. I'm learning to play the harmonica and my singing hasn't been affected much by GB.
Maintaining friendships, my faith and love with my husband and family are key to all of this.
Thank you for sharing! I must take a lot of courage and strength to do what you have done. I admire that you find so many positive things to look forward to, even after the difficulties you have faced. It is wonderful to know that you still have the drive to pursue music, though not in the initial form. The harmonica is a tricky instrument that takes talent, much like the banjo, though the motor functions to operate each instrument are different.
Would you say that re-learning to walk has been one of your greatest accomplishments?
I would be glad to share mine too. I had it back in 1989 and to this day, I STILL have symptoms of it. If you would like to know more about it, contact me here or to my E-Mail at ■■■■■■■■■■■■■■■■■■■
Hi Banksk12! I had what they believe was mild GBS following a Tetanus shot in June 2014. I went from running 6 miles a day about 5 days a week and racing to struggling to walk by myself. And it happened so quickly. I was on vacation and started losing feeling beginning with my toe and ascending up my body through my spine to my face. Initially, I sought help from an urgent care on my trip who thought it may be some kind of auto-immune attack. I returned home early to see my primary who dismissed my concerns as anxiety. I ended up in the ER the following day with a Neurology consult who was puzzled by my strange ascending symptoms. The problem for me was that what I was feeling could not be seen and did not fit the diagnosis mold for anything. I was sent home after good MRI and nerve conduction test results but I was still having progressive numbness and weakness that left me barely able to get up and burning pain up my spine. The worst was the difficulty I had chewing, speaking, and seeing.
I finally got in with a Rheumatologist who thought that I may have mild GBS since I did not end up paralyzed on a ventilator. After about a month, I got in with the best Neurologist in my area. Before that time, I ended up in the hospital numerous times with 6 MRIs, a spinal tap, and 2 MRAs-MS, ALS, and other disorders were ruled out. I was the healthiest disabled person. Great support finally came with a referral to a Physical Therapist who had treated other GBS patients. I had PT with her twice weekly for several months then tapered off as my symptoms got better and I regained my core strength.
I was lucky to discover this support group early on when I was scared to death about what was happening to me. It has been the greatest support initially and now 8 months later into my recovery. I am thankful to be running and working again. I still have small symptoms (worse at some times) but nothing like I had experienced previously and I don't hesitate to ask when I have a question. I have gotten more feedback here than from anyone else and I am so grateful!
Yes, it seems so long ago now, but it probably was one of the biggest victories.
banksk12 said:
Thank you for sharing! I must take a lot of courage and strength to do what you have done. I admire that you find so many positive things to look forward to, even after the difficulties you have faced. It is wonderful to know that you still have the drive to pursue music, though not in the initial form. The harmonica is a tricky instrument that takes talent, much like the banjo, though the motor functions to operate each instrument are different.
Would you say that re-learning to walk has been one of your greatest accomplishments?
I'm all for getting more information out about GBS!!
I developed GBS over 2 years ago. My symptoms came on quickly, starting with numbness in my left thigh, moving down my leg, then up my right leg from my foot to my thigh. Luckily, I was close to an ER, and was evenutally seen by a Neurologist who recognized it, and treated me with IVIG, so it didn't progress above my hips. I have most of the function back in my right leg, 50% in my left leg, some bladder control issues, and muscle spasms and nerve pain even with medication. I'm able to walk with a cane, drive, and I work (at a desk) full time. The only possible cause was thought to be a flu shot I received 6 weeks earlier. I ride a stationary bike, do water aerobics and walk as much as I can to keep my legs from getting stiff. But some days are better than others!
A flu shot? I've read all sorts of research on the different onsets of GBS, and am still amazed by the variety of possible causes. It seems that this condition is one of those that becomes incredibly individualized and presents differently each time.
Your strength and perseverance is impressive. :]
Did you have to make a career change due to your condition, or were you able to adapt your job to meet your needs?
Hi there I developed gbs 4 yrs ago. My lower back started hurting and then got worse I went to the er and they did a catscan didn’t see anything gave me a pain shot and pain meds and sent me home , two hours later I was paralyzed . Long story short I went to a different er after calling my neurologist who has done my neck surgery the year before. I ended up paralyzed from neck down . Was in hospital for six weeks and rehab another two. I had to relearn everything . I still have leg issues and get tired easily. I still do the same job and are on my legs most of the day. It did take 6 months to be able to walk again . I still don’t feel the same as I was and can’t do all the things I used to but I keep working on it.
Hi there I developed gbs 4 yrs ago. My lower back started hurting and then got worse I went to the er and they did a catscan didn't see anything gave me a pain shot and pain meds and sent me home , two hours later I was paralyzed . Long story short I went to a different er after calling my neurologist who has done my neck surgery the year before. I ended up paralyzed from neck down . Was in hospital for six weeks and rehab another two. I had to relearn everything . I still have leg issues and get tired easily. I still do the same job and are on my legs most of the day. It did take 6 months to be able to walk again . I still don't feel the same as I was and can't do all the things I used to but I keep working on it.
I was diagnosis October 2014, I have had 6 MRI, 4 cat scans, biopsy, 60+ blood test, and a x ray. I was completely healthy walking 15 to 18 miles a week. I had no warning signs,I just got up one morning and my legs gave out. I only have it from the lower extremity. I am still not able to move my legs yet, my balance is better, I can sit up without falling, I can get in my wheel chair, on the couch, and back in the bed. I develop 2 bed sores in the facility and it took about 6 months to heal them, but praise God I came home and with a nurse and caregiver they are completely heal. It is one of the most devastating things that could happen to anyone. I am asking God everyday for a miracle. I know he will deliver me in his timing. I will see a 3rd neurologist on August 11,. The bowel and bladder incontinence is really devastating. It hurts to eat so many different kinds of food. you have to take laxatives everyday so your bowels want back up. I lost 30 pounds because I was scared to eat. I have gain about 10 or more back. Your muscles ache most of the time. Everyday is a different day. I exercise my body daily to keep from getting stiff. The hardest part is at night when you’re trying to rest, the pain comes out of no where. I hope I have given you some helpful information. Please keep me in your prayer’s and I have a full recovery.