I am 10 weeks since IVIG stopped progression, but heavy nerve damage to feet, up legs into hip/groin area. PT has gotten me stronger, and able to walk with a cane, but increased pain and discomfort along with it.How long does this persist ? Anyone with similar experience?
neurontin helps and so does vitamin b12...im off the neurotoxin x 2 years but continue to take b12.daily..i can tell when i miss a few days..i start to get that hot shooting pain in hands and feet
Thanks for the info, taking both, most discomfort at bedtime, or when sitting any length of time, cramping feeling in feet and leg muscles. The more I exercise the more resultant discomfort
Been 14 mos. since I was diagnosed. Been home out of hospital/rehab 9 mos. and I still have tingling and numbness in lower part of my legs and in my feet. They seem to be much tighter and stiffer late in the day and at night. I have to use my walker at night when I get up to keep from falling because of the stiffness. I still take the gabepentin (neurontin) twice a day. I was taking 3 times a day, but I tried to get myself off it. Found out that I needed it to keep walking. also found out the same thing about PT. I now just go to fitness as often and for length I desire. If I don't go 2-3 times a week I can really tell a difference. Will this ever get better? I really wonder some times if the nerve damage is permanent. I also am taking B-12.
i think everyone is different..i hate to say yes it will get better and it dont.. i do not want to give false hope..in my case i have had a full recovery..but by the grace of GOD and very good therapy people...i still get tired,and still have some nerve pain but very minimal..i guess everyone recovers differently..all i can say is hang in there and keep working at recovery..walking with a walker or cane is better than not walking at all..i know this may sound silly but determination and a positive attitude does go a long way..there are also non narcotic pain meds that are available for pain control such as TRAMADOL..it helped me alot when i was acutely ill..stay on the neurontin if you need it.. the time will come and you will know it when you can wean off..of maybe it wont,but if it helps,take it..good luck and GOD BE WITH YOU
At only 10 weeks it's pretty early to say what will be. If you can walk with a cane now, you're already doing much better than many, so take heart. (It took me about 3 months to work up to a cane, and many people take way longer.) Have patience. They say it takes 2 - 3 years to fully recover, and I believe them. I'm about half way through that, and although I can do a lot of things I used to do, my legs are still way weaker than I used to be, and I get tired easily.
Patience.
I am just over 9 months after diagnosis/IVIG treatment, and have stiffness, tingling and some pain in legs, feet and groin area also. I have progressed from a wheelchair to a cane, and at times it seems like I'm never going to be "normal" again. But I just have to look back on being flat on my back with both legs paralyzed in November, and know that I am making progress! I take neurontin 3X a day with 2 at bedtime, along with baclofen. I walk on the treadmill 15-30 min. every morning, and try to walk 5-10 minutes every couple of hours. By the end of the day, my legs are very stiff, mostly from sitting too much at work, and I'm very, very tired. I have to get up several times a night (bladder control issues from the GBS), and my legs are always stiff. I haven't tried B-12 but I will. My biggest problem is finding a Doctor who knows anything about GBS and isn't just "guessing".
look for a neurologist who specializes in neuromuscular disorders...i was very lucky to come across the dr i did...also a nerve conduction test (sorry not pleasant) SHOULD be done..hope this helps..ps im 2 yrs out and still get tired
Patience is the key for all of us. Try doing stretches before you get out of bed. That really helped with my stiffness. If you have access to hydrotherapy, that is also a big help. I’m approaching my three year anniversary, and still have pain issues, but not as bad as before. I’m still on gabapentin, 900 mg a day, but way down from the 3600 mg a day. Stiffness seems worse if I forget to stretch. Fatigue is ongoing as well. But still getting better, I will never give up. Eat healthy and do your physical therapy and be patient. Our gains are very small, and seem to go unnoticed, but they add up over time. I hope this was helpful in some way.
Hi, patience and determination is important stay focused on the positive things.
My wife was diagnosed in March of 2011. She became paralyzed from the neck down in February but the hospital she was in thought it was a stroke. She was not treated as it was to late.
She has nothing below the waist, with extreme pain below the knees and in the feet, 20 ml of oxycodone every 3 hours and a 100/ mcg fentynal patch plus 900 Gabipentin daily.
Everyday she does her home PT with me or the nurse. She just recently had tendon transfer on both feet to bring them somewhat inline with her legs. The final cast comes off in September. Her pain base line is 7 now.
SHE STILL WORKS TOWARD BEING ABLE TO STAND AND TRANSFER. Most professionals say no. She says the Great Physician has not told her that. So TIME AND PATIENCE!
Hi - Going on 1 year 6 months since first on-set of gbs. Neuro has promoted me to CIDP. Still have numb and tingling feet and hands. Take b12 1x and neurontin 300 4x daily. Can always know when it is time for next pill. Feet begin to throb. I walk with a cane, work full time as a res agent for united. try to walk every day and ride my trainer about 3 times per week.
You must remain positive. I just remember when I could not button my shirts or put on my shoes without a major production. I could not get out of bed - now I can get up and function. Slower and not always steady -- but I get there.
In the 1960's we said "keep on truckin"
good luck
Thanks, I'll do that.
peaches said:
look for a neurologist who specializes in neuromuscular disorders...i was very lucky to come across the dr i did...also a nerve conduction test (sorry not pleasant) SHOULD be done..hope this helps..ps im 2 yrs out and still get tired
Thanks for your comments and encouragement.
das4u said:
Patience is the key for all of us. Try doing stretches before you get out of bed. That really helped with my stiffness. If you have access to hydrotherapy, that is also a big help. I’m approaching my three year anniversary, and still have pain issues, but not as bad as before. I’m still on gabapentin, 900 mg a day, but way down from the 3600 mg a day. Stiffness seems worse if I forget to stretch. Fatigue is ongoing as well. But still getting better, I will never give up. Eat healthy and do your physical therapy and be patient. Our gains are very small, and seem to go unnoticed, but they add up over time. I hope this was helpful in some way.
Hey FlatRock, did you get my reply yesterday? Your deal sounds almost same as mine. Just recd word from Neuro that I’m CIPD as all progress stopped and I’m back to clinging to walker, will get IGIV infusions at home each 6 mo. Until ? Anyone know?
flat rock bob said:
Hi - Going on 1 year 6 months since first on-set of gbs. Neuro has promoted me to CIDP. Still have numb and tingling feet and hands. Take b12 1x and neurontin 300 4x daily. Can always know when it is time for next pill. Feet begin to throb. I walk with a cane, work full time as a res agent for united. try to walk every day and ride my trainer about 3 times per week.
You must remain positive. I just remember when I could not button my shirts or put on my shoes without a major production. I could not get out of bed - now I can get up and function. Slower and not always steady – but I get there.
In the 1960’s we said “keep on truckin”
good luck
I am a CIDP patient, which is veeeery similar to GBS...I get IVIG monthly, two days per month and I call it my fuel for the month! I, too, have heavy nerve damage and muscle weakness/damage. I don't think there's a true 'time frame' for how long these things persist. I try to consciously approach every day with a 'I CAN DO THIS' attitude and I try to be an encourager to others. I pray you're feeling well today!
Do you know when you need the next IVig? Do the symptoms worsen, or are you on sort of a maintenance schedule? After initial dx and IVig , I went 10 weeks then had a small relapse,requiring another IV treatment. I bounced back immediately, and the neuro thinks maybe chronic so has scheduled 2 maintenance treatments 4 weeks apart. Had the first before any deterioration, and will have another in 2weeks. So far so good. Question, how would you know you are CIDP unless you have deteriorating symptoms?
Stella said:
I am a CIDP patient, which is veeeery similar to GBS…I get IVIG monthly, two days per month and I call it my fuel for the month! I, too, have heavy nerve damage and muscle weakness/damage. I don’t think there’s a true ‘time frame’ for how long these things persist. I try to consciously approach every day with a ‘I CAN DO THIS’ attitude and I try to be an encourager to others. I pray you’re feeling well today!
I am rarely on my page; my apologies... and will work to do better. There are lots of ways you can tell. Deterioration sometimes takes so long but your body gives you other signs that should tell you something is wrong. I always say please don't let doctors tell you it's in your head. Learn and KNOW your body better than they do. I'm blessed to have a great team of doctors but I remember when I didn't. Had I waiting longer to change my team, I'd be dead by now! AND I MEAN THAT.
Opatom said:
Do you know when you need the next IVig? Do the symptoms worsen, or are you on sort of a maintenance schedule? After initial dx and IVig , I went 10 weeks then had a small relapse,requiring another IV treatment. I bounced back immediately, and the neuro thinks maybe chronic so has scheduled 2 maintenance treatments 4 weeks apart. Had the first before any deterioration, and will have another in 2weeks. So far so good. Question, how would you know you are CIDP unless you have deteriorating symptoms?
Stella said:I am a CIDP patient, which is veeeery similar to GBS...I get IVIG monthly, two days per month and I call it my fuel for the month! I, too, have heavy nerve damage and muscle weakness/damage. I don't think there's a true 'time frame' for how long these things persist. I try to consciously approach every day with a 'I CAN DO THIS' attitude and I try to be an encourager to others. I pray you're feeling well today!
I was diagnosed with GBS in November. Symptoms started in October. By time diagnosed I was told it was to late for IVIG or Plasma exchange. I am very fortunate as I can walk on my own but very unsteady. I also would like to find a physician that has experience with GBS in Florida (any suggestions) I see many of you are taking B12, is this in pill form?
Glad you are at least up and walking. Just do the PT religiosly, although don't over do it or you could slip back. Takes time , ever so slowly you'll regain balance and strength. They tell us Vitamin B 12 with Folic (in pill form) speeds regrowth of Myelin Sheath. I'm taking that (8 months) plus lots of Dr. Sears Fish oil, heavy berries and fruit. There is no magic potion, its a looonnng sllooowww process, but seems to be working. My Nuero is out of Cleveland Clinic, Palm Beach Gardens, Florida office, Dr. Michelle DomPenciel. Shes great.
Cindy Bug said:
I was diagnosed with GBS in November. Symptoms started in October. By time diagnosed I was told it was to late for IVIG or Plasma exchange. I am very fortunate as I can walk on my own but very unsteady. I also would like to find a physician that has experience with GBS in Florida (any suggestions) I see many of you are taking B12, is this in pill form?
So does ivig really help much or no