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I am a 64 year old female and I was diagnosed with GBS in early May 2013. Though it came on very quickly, my legs were paralyzed within a week, it did take a week before I was able to get in to have 4 MRIs performed to realize that is what I had. I was admitted to the hospital and had the 5 days of IVIG treatments and then was admitted to Rehab for another 11 days for Speech, Occupational and Physical Therapy. It was very intense, 3 hours each day, but I was finally released to go back home. I was using a walker, could do some cooking and dress myself. My hands felt like they were asleep all the time. I had lost 15 pounds in two months because the thought of food was just nauseating. But within 3 weeks, I went from doing things for myself to being totally dependent. Well I shouldn’t say that because my husband, Steve, was absolutely fantastic! He checked on me regularly, had to learn how to run the washer and dryer and even learned how to put some meals together. I was feeling so helpless but then I had a relapse and was having difficulty walking and climbing our stairs again. If it weren’t for Steve being my advocate, I don’t know what I would have done. He took me to Emergency once again because my Neurologist was on duty. Dr. Foley admitted me and started the 5 days of IVIG treatments again. I had to return to Rehab for 5 days of Physical Therapy. This is where my Success Story begins. I had started walking like a duck before I was admitted to the hospital for the second time but after the re treatment and physical therapy, I was walking normal with my walker. After a couple of weeks of seeing my P.T., I was able to walk with a cane. I used a cane for less than a week when I felt I didn’t need assistance at all. I was able to get back to driving with confidence and even went back to Curves for Woman with no restrictions. My handwriting was atrocious since I didn’t have feeling in my hands. My Occupational Therapist gave me a tablet to practice writing and now I am able to write like my pre-GBS disease. I, of course, did have the agonizing pain initially when my nerves started to regenerate and had a few moments where I was really sad not knowing what I was facing for the future but I feel so blessed. My family and friends were totally supportive and never made me feel as worthless as I felt. I will always remember the care, support and most of all the prayers everyone said for me. I totally believe each and everyone was heard by God and it lead me to a speedy recovery!
Before I was aware of this website, I had no one I could go to for answers. My regular M.D. had only one GBS patient 20 years before so she was struggling with answers as much as I was. My Neurologist was able to guide me but I only saw him 3 times. I found out that when people don’t understand what you are going through, it makes them uncomfortable and they don’t want to talk or even listen to what you have to say. It made it very difficult and lonely. I tried not dwelling on the subject but I couldn’t help having my mind continually wondering how this would all end. My M.D. did put me on a small dosage of Zoloft. I never felt suicidal but she felt I should probably have something. I recommend it for all GBS patients.
I do want to make a recommendation and that would be, you have to be your own health care advocate. As I said, my husband was mine but not everyone is as lucky as I am to have the love and support he provided. Not enough doctors are familiar with this disease and that is why it is so important to get the tests run so they can figure out what treatment is necessary.
My heart aches when I read stories where patients are in the hospital for extended periods and they don’t have what they need to recover quickly. May God bless you all!
Terry Donnell
thanks for sharing Terry. Are there any links/discussions on the site that especially helped you?
Scott, your discussion link was most helpful when patients could ask questions and others chimed in with their experiences.thanks for sharing Terry. Are there any links/discussions on the site that especially helped you?
awesome
Hi Terry,
I came down with GBS in 2009. I am very new here and kinda shy. Not knowing where to start:( I still have all the "symptoms and pains" of GBS. even typing hurts LOL...............anyhow, I read your work here and thought, "Wow, I think she won!" and I smiled:)
Terry said:
I am a 64 year old female and I was diagnosed with GBS in early May 2013. Though it came on very quickly, my legs were paralyzed within a week, it did take a week before I was able to get in to have 4 MRIs performed to realize that is what I had. I was admitted to the hospital and had the 5 days of IVIG treatments and then was admitted to Rehab for another 11 days for Speech, Occupational and Physical Therapy. It was very intense, 3 hours each day, but I was finally released to go back home. I was using a walker, could do some cooking and dress myself. My hands felt like they were asleep all the time. I had lost 15 pounds in two months because the thought of food was just nauseating. But within 3 weeks, I went from doing things for myself to being totally dependent. Well I shouldn't say that because my husband, Steve, was absolutely fantastic! He checked on me regularly, had to learn how to run the washer and dryer and even learned how to put some meals together. I was feeling so helpless but then I had a relapse and was having difficulty walking and climbing our stairs again. If it weren't for Steve being my advocate, I don't know what I would have done. He took me to Emergency once again because my Neurologist was on duty. Dr. Foley admitted me and started the 5 days of IVIG treatments again. I had to return to Rehab for 5 days of Physical Therapy. This is where my Success Story begins. I had started walking like a duck before I was admitted to the hospital for the second time but after the re treatment and physical therapy, I was walking normal with my walker. After a couple of weeks of seeing my P.T., I was able to walk with a cane. I used a cane for less than a week when I felt I didn't need assistance at all. I was able to get back to driving with confidence and even went back to Curves for Woman with no restrictions. My handwriting was atrocious since I didn't have feeling in my hands. My Occupational Therapist gave me a tablet to practice writing and now I am able to write like my pre-GBS disease. I, of course, did have the agonizing pain initially when my nerves started to regenerate and had a few moments where I was really sad not knowing what I was facing for the future but I feel so blessed. My family and friends were totally supportive and never made me feel as worthless as I felt. I will always remember the care, support and most of all the prayers everyone said for me. I totally believe each and everyone was heard by God and it lead me to a speedy recovery!
Before I was aware of this website, I had no one I could go to for answers. My regular M.D. had only one GBS patient 20 years before so she was struggling with answers as much as I was. My Neurologist was able to guide me but I only saw him 3 times. I found out that when people don't understand what you are going through, it makes them uncomfortable and they don't want to talk or even listen to what you have to say. It made it very difficult and lonely. I tried not dwelling on the subject but I couldn't help having my mind continually wondering how this would all end. My M.D. did put me on a small dosage of Zoloft. I never felt suicidal but she felt I should probably have something. I recommend it for all GBS patients.
I do want to make a recommendation and that would be, you have to be your own health care advocate. As I said, my husband was mine but not everyone is as lucky as I am to have the love and support he provided. Not enough doctors are familiar with this disease and that is why it is so important to get the tests run so they can figure out what treatment is necessary.
My heart aches when I read stories where patients are in the hospital for extended periods and they don't have what they need to recover quickly. May God bless you all!
Terry Donnell
We'd love to hear more success stories. :)
Terry said:
I am a 64 year old female and I was diagnosed with GBS in early May 2013. Though it came on very quickly, my legs were paralyzed within a week, it did take a week before I was able to get in to have 4 MRIs performed to realize that is what I had. I was admitted to the hospital and had the 5 days of IVIG treatments and then was admitted to Rehab for another 11 days for Speech, Occupational and Physical Therapy. It was very intense, 3 hours each day, but I was finally released to go back home. I was using a walker, could do some cooking and dress myself. My hands felt like they were asleep all the time. I had lost 15 pounds in two months because the thought of food was just nauseating. But within 3 weeks, I went from doing things for myself to being totally dependent. Well I shouldn't say that because my husband, Steve, was absolutely fantastic! He checked on me regularly, had to learn how to run the washer and dryer and even learned how to put some meals together. I was feeling so helpless but then I had a relapse and was having difficulty walking and climbing our stairs again. If it weren't for Steve being my advocate, I don't know what I would have done. He took me to Emergency once again because my Neurologist was on duty. Dr. Foley admitted me and started the 5 days of IVIG treatments again. I had to return to Rehab for 5 days of Physical Therapy. This is where my Success Story begins. I had started walking like a duck before I was admitted to the hospital for the second time but after the re treatment and physical therapy, I was walking normal with my walker. After a couple of weeks of seeing my P.T., I was able to walk with a cane. I used a cane for less than a week when I felt I didn't need assistance at all. I was able to get back to driving with confidence and even went back to Curves for Woman with no restrictions. My handwriting was atrocious since I didn't have feeling in my hands. My Occupational Therapist gave me a tablet to practice writing and now I am able to write like my pre-GBS disease. I, of course, did have the agonizing pain initially when my nerves started to regenerate and had a few moments where I was really sad not knowing what I was facing for the future but I feel so blessed. My family and friends were totally supportive and never made me feel as worthless as I felt. I will always remember the care, support and most of all the prayers everyone said for me. I totally believe each and everyone was heard by God and it lead me to a speedy recovery!
Before I was aware of this website, I had no one I could go to for answers. My regular M.D. had only one GBS patient 20 years before so she was struggling with answers as much as I was. My Neurologist was able to guide me but I only saw him 3 times. I found out that when people don't understand what you are going through, it makes them uncomfortable and they don't want to talk or even listen to what you have to say. It made it very difficult and lonely. I tried not dwelling on the subject but I couldn't help having my mind continually wondering how this would all end. My M.D. did put me on a small dosage of Zoloft. I never felt suicidal but she felt I should probably have something. I recommend it for all GBS patients.
I do want to make a recommendation and that would be, you have to be your own health care advocate. As I said, my husband was mine but not everyone is as lucky as I am to have the love and support he provided. Not enough doctors are familiar with this disease and that is why it is so important to get the tests run so they can figure out what treatment is necessary.
My heart aches when I read stories where patients are in the hospital for extended periods and they don't have what they need to recover quickly. May God bless you all!
Terry Donnell
Terry, my story is remarkably similar. I am a 66 yr old male in Stuart, Florida.Always a very strong,healthy, athlete, active in sports and outdoor activities. In May of this year i got a 2 day flu, kicked it and was playing golf the next day. A few days later dizzy and off balance, a few days later tingling in feet and hands. A few days later primary doc was concerned I might have had a TIA. Neurologist took MRI and no signs of stroke or heart issues. He thought it was a simple post viral reaction.My wife knew of a friend who had GBS many years ago and asked the Neuro if my thing could be GBS. "Absolutely Not" was the response. A few days later severe neuropothy spread up from feet to knees, couldnt walk. Checked into local hospital, where ER doc in addition to full blood workup, took a spinal tap as he suspected GBS. Called the Neuro in again,with same reaction, "Not GBS "(even tho highly elevated protiens in spinal), blurred double vision, weakness, and numb into the hips by now. He hadnt even taken a Nerve Conductivity test. Release from hospital home with PT.
Time for 2nd opinion,luckily got an appointment with a Neuro at Cleveland Clinic. Sent ahead all lab, MRIs, records, etc . and crawled into the office clinging to a walker. Its now 3 weeks after first signs. Didn't even sit down as, Neuro said "You have GBS, cant believe they even released you from the hospital. You have to go immediately to Cleveland Clinic ER for IVIG treatment.". After 5 days IV treatments, 8 days in a rehab intense PT hospital, went home in a wheel chair. Learned to walk with walker, then after 6 weeks home PT much improved, graduated to a cane. Cooking along until mid August and all of a sudden got weak again and symptoms returned. Neuro concerned may be Chronic (CIDP), ordered second IVIG and a maintenance treatment every 6 weeks for 6 months. After that treatment I have improved exponentially. 2 more treatments to go, No set backs so far (knock on wood). Im walking totally unaided, now up to 15 minutes on the treadmill (without holding on), 15 minutes on stationary bike. Muscles and nerves in R leg are a mess, very agitated, on fire and painful especially after workouts, but Im able to cope. The feeling in my feet is returning albeit ever so slowly. Have good balance and strength is returning.
The success part is that I am so blessed with the greatest angle caregiver wife who has carried the brunt of the load taking care of me, wasnt sure I would be able to walk again, and I am happy to say we even got on the dance floor a few weeks ago and did the "Soshe" (short for Social, an old Michigan dance from the 60s) Better yet she even has gotten me back out on the golf course and I able to hit the ball without falling down. I am cautiously confident that we are over the hump and well on the track to full recovery. We will know in a few months after the last scheduled IVIG and if I have no setbacks. Im not liking the CIDP possibility, but we'll take things as they come. I look around and see and hear of those much worse off than me and am thankfull every day to be alive.
Our stories are so very similar. Thanks for writing in. I wonder if I might have another recurrence of this ailment someday. You were perking along as well as I am until it reared it’s ugly head again. I certainly thank God I recovered fairly quickly and pray my remission continues. Our spouses are amazing, I send best wishes to you both!
Did you ever have cramping nerve and muscle pain? If so, do you still have or how long before it went away?
Terry said:
Our stories are so very similar. Thanks for writing in. I wonder if I might have another recurrence of this ailment someday. You were perking along as well as I am until it reared it's ugly head again. I certainly thank God I recovered fairly quickly and pray my remission continues. Our spouses are amazing, I send best wishes to you both!
I'm a 20 year old male. I was diagnosed with GBS in Janurary 7, 2014 .I was a victim of GBS in April 2002.Mine came very rapidly. I went to sleep that night with no problems and woke up with my legs paralyzed. When I went to the hospital(loma linda) they were unable to find out what was wrong so they just kept me hooked up to an I.v. and let it past. I made a recovery within two weeks. But I never did any follow ups or any physical treatment until recently so now since I've been diagnosed I've started physical therapy and I've been perscribed gabapentin
That's so scary Jovel but great that you recovered quickly.
Yes but since I never did any follow ups or physical treatment, I still have pain in my legs
Novel, I didn’t understand when you had GB? I have a daughter 14, and she was diagnosed GN in 2012. Now we are in hospital, because she is feeling weakness but for a few days she is ok. Is it possible that’s. Only temporarily stages after GB,or its back?
Sort, Jovel*
I read that gbs stays dormant the body after its already past. one of the side effect of gbs is muscle weakness and tingling. depending on how much her bodiy was effected by gbs she can feel pain for up to 3 years. And 3 percent of patients with gbs can feel pain for even longer than 3 years. the best treatment she can do is stay active and keep up a strong immune system
if shes needs medicine for it then she needs to take some type of nerve blockers like gabapenten (neurontin) or lyrica (Pregabalin) or medical marijuana
Thx Jovel!!! Which medicament are best for kids (14),…and she trains Taekwondo for a 8years but I think its not so perfect sport for " after GBS terapy". Maybe some Other sport or activity?
I would say either gabapenten or lyrica and taekwondo is perfect because you have to eat healthy and stay fit