My 25 y/o brother was diagnosed with GBS about a month ago. He was given IV treatment at the hospital and remained under doctors supervision for a week. After about a week, when doctors were sure that the disease was not spreading to his lungs, he was released from the hospital. He has been home for almost 3 weeks now. What are some of the signs of recovery that we should look out for? Everyday he feels something on his limbs, neck, face, tongue, and eyes. Just starting today, he has been having double vision. Every object appears double to him. I’d truly appreciate any thoughts or signs of recovery that you can share. Thanks in advance.
It would be helpful to know how much of his body was affected at the worst point. If your brother was released from the hospital after only a week, this does not sound like that bad of a case (relatively speaking -- after a week, I was still on the decline, and at two weeks was completely paralyzed, near death). Is he able to move at all? Walk? At one month, his nerves will probably be "on edge" pretty much continuously, so I'm not surprised to hear that every day brings some new sensation. Remember that the recovery from GBS is very slow -- on the order of years, not weeks or even months.
Good luck to you both!
From my experience, the recovery process is slow but changes daily. I have gone through various stages and had no one to advise me as to what to expect. I am in my 4th month of recovery. I came home with a walker, the following week went to a cane, and 2 weeks later to walking (very zombie-like)slowly. My brain wouldn’t allow me to try what I could not do, but as the nerves have regenerated I do things I couldn’t do the day before. One day I sat on the couch and stretched my arms up in a real stretch. That was about week 8 and I realized I hadn’t actually been able to stretch til then. I had to have help walking to the bathroom at night and used a tall toilet seat until week 8. I seem to find that when my hands “fire” needle like pains really bad, I have a breakthrough the next day in some little way. Cold hurts severly. If I take a cold apple or egg from the fridge the pain is excrutiating but heat seems to help. If I go to sleep with a hot rice pack between my hands it masks or calms the pain and helps me get to sleep. For the first time this week I was able to hold the blow dryer long enough to dry my hair without help and it is month 4. All this to say, it is little steps at a time. Some days are better than others. Keep moving, be patient with expectations if you are a high achiever but have confidence and peace to know it will improve.
Wow!! No physical therapy or full up with a doctor or a Neurologist? We had a full year with the doctors and 4 months of therapy. If you can I would see about the physical therapy it really helped.
Good Luck
HI Naveed,
Suggest you to find a nice physio therapist cum counselor who can divert his mind & fill confidence. It is really tough but try to keep him happy all the time. It will surely help a lot. In my view, understanding of his pain is also helpful in such cases.
Chandan
Hi Naveed,
Id like to thank u and all who answered your questions. They are helpful to me also because I am scared in not understanding how many IVIG treatments are necessary. I received one round of 5 days in a row, getting worse that whole week, but the following week did not seem to get worse… not better either! i start a second 3 day round in two days (2 weeks after the first round). I am scared the Dr may make.that my last round as he originally didnt want to do the 2nd round. My question is… will I see improvements right away IF these treatments are.effectively stopping the autoimmune attacks on ny nerves? How will I know when the autoimmune attacks have stopped? Someone mentioned the nerves regenerate at a.rate of 1/4 inch a month, but that doesnt make sense when some people have mentioned making big strides. My neurologist said some people get better from nerve.damage.in two weeks, but thats not what Im reading on this support group. Naveed, I wish your brother the best, and he is very lucky to have u watching out for him. You being there for him is huge (even if he’s like me, not paralyzed).I am pretty much alone in this, being a single mom of older teens. Thank God I only got as bad as barely being able to walk, drive, write, breathe,… and it never got worse past 6 weeks for me. mine came on fast but progressed gradually after the first week for some reason.
i hope u get all the answers u are seeking. I was given some good advice… “This is an illness of patience”… too bad im such an impatient person… someone who makes things happen. I just dont thing in this case Im going to get my way… LOL I hope your brother does.
Chatty Kat
GBS is an illness that starts from bottom to top so the healing starts from top and goes to bottom. Some of my "healing" signs were... I started having a little better bladder/ bowel ocntrol but a lot of that was the IVIG, It is so very invasive that it takes over your body for a little while. I had bad reactions to it so they slowed my drip down. Also, the sensations in my hands, (the heat sensation) started to be different, I was able to touch my skin or objects without it burning / sometimes freezing. My physical therapy was intense and I did alot of it on my own,sometimes 3 X's a day. A stationary bike and big balls helped strengthen legs and hips and bands and weights helped upper body, but my breakthrough was getting up off the floor by myself and then off the couch from a seated position. Those were my turning points. I also had some double vision. The gabapentin was the cause of my dizziness and drowsiness so I cut down on it and all problems went away, I was taking 6 or more a day. I kept a diary so I could watch my progress. I came home to a walker and shower seat in the shower and a wheelchair, soon after a cane. In two weeks I was back in my bathtub, and in 3 weeks, I was feeling pretty good. Started driving again after the 4th week home. I still have a tingling in my nose and lips and the bottom of my feet at night. It is really bad when I am dead tired. It's a small trade off for what I experienced. I tired easily but took a nap everyday when I felt like it. Rest is essential. I think home is the greatest place to recover. Best of luck as you pass through this tough time, and come out with a sense of thankfulness.
Hi Naveed
Want to clarify one thing that please ignore the timings (1st week, 2nd week...etc). It depends upon the attack of GBS, type of GBS, patient body and many other factors. In some cases, it may be faster / slower than this. Good luck dear.
Thanks everyone. He’s now in his 5th week & his condition is now deteriorating. He is totally paralyzed, can’t feel his legs at all. However, he is feeling a lot of burning sensation on his face & zapping. He also is having a lot of stabbing pain on random body parts. Is this normal?
I won't say the condition is "normal," but it's not unusual. Your brother is experiencing a pretty bad case, if he has total paralysis. This is a dangerous time for him, I won't try to sugar-coat it. When I was in that state, I honestly thought I was going to die. His psychological state is important here, because he needs to mentally "push back." He may or may not be able to hear you, but talk to him and tell him that his presence in the family is important. (He may be pretty heavily drugged, to help him deal with the pain.)
Best wishes, and please let us know how he progresses.
Best wishes to your brother and you.My GBS started with double vision it is called the Miller Fisher Gbs,I spent 3.5 months in the hospital with 4 weeks being in ICU. Spent some time at an LTAC unit then was accepted into in patient rehab at the original hospital after some improvement.I was released after about 6 weeks and began out pt rehab for 6 weeks. I am much improved and continue therapy on my own ding about 1 1/2 to 2 hours a day it is very hard work tell him not to give up and encourage him.This is survivable it is a long road but as long as there is life there is hope! I am still not back to work and may never be as I have much fatigue and continue to use a walker and wheelchair am able to walk short distances without walker with extreme caution.Dont give up fight and then fight some more!
Lance B
I, like you, was in decline for over a week. Completely paralyzed and couldn't move nothing for a week, spent 14 days in ICU, 7 plasmapherisis treatments, and 3 blood transfusions, and then on to rehab facility for month and a half. I came home in a wheelchair, while progressing to walker. Had OT 2 times a week, and PT 4 times a week. Eventually therapy sessions were reduced, but all-in-all continued for 6 additional months. It was 7 months after being diagnosed that I took my first step unsupported/ totally independent. Recovery for me was a slow process, and I am thankful and blessed for my healing. I still have neuropathy pain in feet, legs, and back, and no sensory/ feeling infeet and tips of fingers, but that is okay.
LanceB said:
It would be helpful to know how much of his body was affected at the worst point. If your brother was released from the hospital after only a week, this does not sound like that bad of a case (relatively speaking -- after a week, I was still on the decline, and at two weeks was completely paralyzed, near death). Is he able to move at all? Walk? At one month, his nerves will probably be "on edge" pretty much continuously, so I'm not surprised to hear that every day brings some new sensation. Remember that the recovery from GBS is very slow -- on the order of years, not weeks or even months.
Good luck to you both!
Hi Naveed, just like your brother on week 5 in my GBS I was completely paralyzed from my neck down. Also affected was my right eye. And I too use to have stabbing pains mainly on my feet. I was told that the GBS needs to plateau before healing begins. Encourage your brother to stay strong. It will get better.
Naveed said:
Thanks everyone. He's now in his 5th week & his condition is now deteriorating. He is totally paralyzed, can't feel his legs at all. However, he is feeling a lot of burning sensation on his face & zapping. He also is having a lot of stabbing pain on random body parts. Is this normal?
The first week after diagnosis, even after 3 plasmapherisis treatments, my body was still on a decline. I became totally paralyzed, and even half of my face was paralyzed. After 2 weeks, and 7 plasmapherisis treatments and 3 blood transfusions, my face had made recovery and I was able to use my arms but with very minimal strength. With intense daily PT and OT, after 7 months, I did make my first independent/ unassisted steps, but was not real steady, and sometimes when my knee would bend, it would buckle under me causing me to fall. Recovery is different for everyone, and GBS affects people differently...some more severe than others...be patient and keep moving on.
Hi Tweets,
Sounds like you had a pretty bad case, but it sounds like you're pulling out of it (or have already done so). I totally recall that feeling where your knee gives way under you. Fortunately I'm past that now, and moving pretty well. It still amazes me how long it takes to build up muscle strength again, though. After 2+ years, my leg muscles are still a lot weaker than they used to be, and I work on them every day. Oh well, like you say, gotta keep moving on.
Lance B, I too still get very weak all over and fatigue quite easily. Just about everyday my feet, legs, and low back ache/hurt. Often it doesn't matter if I've been on them all day, or just a little. Given it has been 3 years now since diagnosis, I'm beginning to think this is something I am going to have to live with. I use to love to walk or dogs. Have tried to do that, and can get so far and then my leg and feet pain gets the best of me making it difficult sometimes to get back home. So, I gave up on that. I now am encountering some other health issues with my liver. Seeing a liver doctor in 3 weeks. Hopefully all is okay. I often wonder if maybe I should have not gone back to work, and instead spent my time working on my health. I was told by my neuro, that sometimes people who already have an autoimmune disease (I have hypothyroidism) are more prone/susceptible to other autoimmune diseases.
Hi Tweets,
Sorry to hear about your additional problems, coping with the aftermath of GBS is hard enough all by itself! I hardly walk at all, personally, but I get exercise from riding a unicycle. (Sounds weird, I know, but it helps a lot with my balance and leg strength.) Doesn't hurt my feet like walking. It's easy to over-do the exercising, so be careful. I'm a little over two years out now, and feel like I've pretty much plateaued as far as nerve recovery goes. My strength still comes back, but very very slowly. Got to keep at it, though, not much alternative!
Good luck and best wishes, Lance
Nave end, sorry to hear this. My brother in law has had this since since June 15th. Tough times and deterioration. Things are beginning to look up just this week. Be patient it can happen but it is a long road. Prayers for your brother!
Just thought to provide you all with an update on my brother's condition now. It now has been over 4 months and my brother has now started to sit up on his own. He still can't stand up or walk but sitting up on his own has brought a lot of cheers on his face. He also has started typing and texting and his slurred speech is almost gone. He also is getting some solid food to chew on. I, however, have put him on a special diet of bananas, medjoul dates, whole milk, and plums. This diet seems to be helping him gain a bit of strength now. I came up with this diet on my own after doing some research on treating nervous system.
He also is getting physiotherapy, acupuncture, and speech therapy every week. My goal is to make him walk on his own by the end of this year.
Congratulations, Naveed! Your brother is so lucky to have you! Good luck and keep us posted!