February 9, 2018 at 5:56 am
P.s. Mcp, I had 8 years of PT and OT to strengthen muscles, but some never did return, but all in all, I was go getter and very active. Bike riding was my happy place! Since I have experience the problems with legs, no bike riding, boohoo. I do have spin bike I use to keep quads strong.February 9, 2018 at 5:50 am
Have you been doing physical and occupational therapy? I had GBS when the ivig treatment was not available or even thought of. Did you have any blood transfusion? I too was paralysed up to neck, no tracheotomy. Resdiual weakness in the lower extremities. I have been active until 2016, it’s like everything is wore out. I have appointment at Wayne State UniversityJanuary 17, 2018 at 2:50 am
I saw my Dr. For EMG results and they were abnormal but that is normal. I am planning to see Dr. At center of excellence facility as last attempt to see if there is anything else I can do. For now I need to wear my braces on ankles. Especially in the snow, it’s like walking on Jello! I’m not sure what kind of shoes I will wear in summer but my Dr advised to have braces for all seasons. It’s less about my knees lately as far as pain etc. It’s very much about my ankles. I’ve also had swelling again in feet and calves. My Dr. Suggest that maybe the ligaments that surround the ankles are stretched and unable to aid in my stability. In past 42 years I know I’ve rolled my ankles numerous times, never falling. Maybe all those “saves” are used up. At home inside my home, I’ve been wearing my braces and tennis shoes. I feel very supportive and stable. Because when I’m wearing slippers or socks, my feet are constantly trying to roll on the sides. It’s so automatic, I have to look down and correct my stance. The ligaments and tendons in my knees must be giving out as well for it seemed to affect knees and then now ankles. My doctor also said that testing results did not show any GBS reoccurrence or any other sources to cause the instability. So one foot in front of the other I go, feeling very grateful 😊January 2, 2018 at 5:30 am
I was 12 years old when I came down with GBS. I had no ivg transfusions or any treatment other than physical therapy and occupational therapy for 8 years. I was left with weakness in lower extremities especially the ankles. Could not do tiptoes, run etc. I walked unassisted and was very active, bike riding and swimming. I overcame alot of issues associated with the muscles that never returned.
Fast forward 42 years later- knees in last few years retaining fluid. Right knee is worse. Have arthritis in both knees. Painful when walking longer distance and instability in ankles. Snow, sand, rocks, I cannot walk without assistance. My feet are like jelly and no stability. This has came on suddenly as in August of 2016, I was walking my dog 1 Mile a day.
One symptom you described I also have had-
The water trickle sensation down my calf! I literally had to feel it, it was so real but nothing there, odd! I have talked to Doctors (a lot of them) and they look dumbfounded and said it is Not the fluid buildup in knees as it is isolated in knee area. I have been to a dozen doctors, orthopedic surgeons, neurologist, ankle specialist, podiatrist to no avail. I have a bag of expensive AFO’s, knee braces , special shoes, casting of correction and really no answers of the why, except that my knee joints are wore out and this is my life. I worked for 36 years, raised 2 daughters and was self sufficient, now I need help to do a step…..
No surgeons are willing to do any knee replacements or part/piece, they said it’s too risky and it may not help because I’ll still have same muscle strength and function as current. I really having a rough time wrapping my head around this as how can my muscles that I used go from 10 to zero. I know I compensated muscles for ones that never returned? I know that my gait has been very determental in general. I never saw neurologist, 1st time was 2014. I then could get up off floor without using my hands, now I have trouble even using my hands!
I do have restless legs and without medication, it is unbearable. I know I should make peace with what I have, it’s just unbelievable how fast it changed.
I am interested in whatever you find on the trickle down the leg cause. What is a rolltor? I use cane daily. I have no other symptoms you spoke of other than the strange sensation water. I will see doctor to discuss my EMG in 2 weeks. I’ll let you know if I find out anything new and useful and post to the site. Sorry for the book, and take care!December 31, 2017 at 12:54 am
That is good that you are seeing a neurologist. When I started experiences of weakness I saw one in February and he did accessment of my strength, I saw him again Oct and No changes in muscle strength. Yay! So I had something to compare to!
So again I am comensating muscles when my knees became an issue. I also had experience of knee buckling, I use knee brace. That was very unsettling and painful. Please let me know how you make out at appt in Jan. Please stay in contact and it’s very nice to finally connect with a GBS patient that had none of the latest treatment. Talk soon!December 29, 2017 at 1:54 pm
To Reply to Birdalot,
Thanks so much for your input, it made me smile to know that you had GBS 2 years earlier and did so well after without having any of the latest treatments! I currently did not see neuroligist until I was in my early 50’s. Being 12 yrs old, I did not direct my care, my parents were my force and they did not know much, I went with the flow. I did not need a Trach as my breathing remained stable after 1 week. I am very happy for you to have full life with Children and completing your studies in college. Retired now?
I am pushing on but I guess I did not think this would happen…..I was active (as I could) for many years and to look at a step and wonder how I am going to tackle it, that is hard. But having waek ankle muscles & weak calf muscles, every step is like slam, I gather that is because my knee muscles are not doing what they used to. I to date have not found a Doctor that is well versed with GBS here in Michigan. Especially that could relate to our conditions in late state of treatments methods. I also know of no known book. I’m ready to write one, LOL! I do belong to Autoimmune publications so i can be aware of any studies or progress.
Do you have restless leg? Did you primarily walk on sides of your feet? Did you rely on stronger muscles to use while some muscles did not return fully? I am very happy to have you reply and very happy to know that you are doing well!
Also years ago I had awful callus on my feet from my walking style, but then I removed all callus’s and feet were looking pretty normal. Now since my knees have worn out, I am using again different muscles, callus are back along with spur bone on side of my right foot. Doctor’s say it is because that is where I am putting the pressure to be able to walk. I hope to get AFO/Braces to stop that.
Hope to hear from you soon and again THANK you for your reply!December 25, 2017 at 6:26 pm
I would find another hospital or Dr. I had 2 spinal tap, they first diagnosed me with calcium defiency and drink qt of milk. Next day I couldn’t walk. There was NO fancy treatment to help me, just therapy. If you indeed have GBS, you should be treated to assure a better recovery.
Good luck!December 25, 2017 at 4:24 pm
Thanks Eric, it seems that the IV treatment helped to stabilize your muscle weakness. I haven’t been able to do knee bend/squats since I contracted GBS in 1974. Or stand on tip toes, jump. My calves show atrophy as I was not able to regain those muscles. Even after 8 years of PT. In 2015, I was able to get up from the floor without using my hands. The doctor was impressed. Then fluid buildup in my knees, tightness and pain set in. I also experience greater instability. I had always had stability issues, like plush carpet, rocks, sand, it was hard to stand without leaning on something. But this new symptoms of steps, harder to do and lifting my leg to get in SUV. Doctors say knees are wore out from walking 42 years by compensating my muscles for lower ones that I could not build back muscle as nerves we’re not conducive. So unfortunately our outcomes are very different. I have been active for years, bike riding, bowling,walking theb dog on cold wonter nights and was very active and strong. I just did things alittle different and compensated for muscles that did not come back with the muscles that were stronger. To say the least I am very disappointed in my new demise. My weakness was very profound. I walked 9 mts after being in hospital for 4 months. I worked 36 years, had 2 babies, normal delivery, full term. No issues. Just trying to understand what or why. I see Dr.to see my EMG results. Probably try to see if bracing would help. I live in Michigan so walking in snow is tough. I wear calf high boots that are like ski boots. They help. Sorry so long, really would like to hear from any GBS patients from 1974 to 1980’s. Curious about their progress. Thanks😊December 24, 2017 at 6:40 am
Eric did you have the IVG or hemoglobin transfusion?
What method did you use for the quad strength rebuild? I am doing spin bike 45 minutes, I don’t stand, too painful. Thanks for your help.December 22, 2017 at 3:13 pm
” Jim., sorry 😊December 22, 2017 at 3:12 pm
Thank you John will look into it.December 22, 2017 at 6:08 am
I agree with doctors, too risky for replacement and may damage my mobility situation even more.December 21, 2017 at 10:05 am
I had GBS in 1974 as 12 years old. Nothing was known, my only treatment was 8 years of physical, occupational therapy. I could never run or step on tip toes again. I walked with limp and unassisted. All was good until last year, my knees are worn out, giving me terrible instability, I fall often if any uneven ground etc. I use cane every day, and stairs up or down are tough! I’m 55 years old and am off work indefinitely and have long-term insurance. Thank God I have already put in 36 years and raised 2 daughters. I’ve been to more than dozen doctors, specialist, surgeon’s. The risk is too high for knee replacement, so now I’m looking at bracing for ankles, legs. If anyone would have told me years later, all would go down hill, I would of called them a liar. I was so active, worked 8 + hours, come home ride my bike on road for 15 miles, cut grass, you name it I did it! It’s still a hard pill to swallow, but I am accepting that I will do things differently and go on. For years I was never wanted to be labeled”disabled” so I pushed on and of course being a young teen girl, I never wanted to be different. Today I am disabled and it’s very noticeable. I don’t care about that, but I just never thought of this happening. I ride my spin bike 4 days a week at least , I want to keep my quads strong and when weather is nice, I will buy recumbent bike. I refuse to give up yet! I know that alot is not known about long term GBS, but I seriously would love to hear from ANYONE having GBS in 1980’s that DID NOT have plasma exchange OR hemoglobin transfusion/Ivg treatment. I would like to know how others are doing, or if it affected their knees, hips etc. Thanks for this opportunity to reach others and feel not alone👌September 26, 2017 at 7:40 am
I had GBS 1974, all that was available for treatment. PT & OT 8 years all through school & in house. I never ran or regained calf muscle. But I did well from paralysis from neck down. Resdiual weakness in lower extremities. Good luck!September 26, 2017 at 7:32 am