Hi All, I was diagnosed with GBS today after a nerve test and lumbar puncture. I had tingling in my feet on sunday (4 days ago) which quickly spread to my hands and then vsrious parts of my body. Monday was relatively ok but by tuesday I was having trouble walking and today I have very weak arms and severe problems walking. I can barely walk upstairs.
I have a couple of questions. Firstly, because I have not really worsened from yesterday to today my doctor thinks I may have plateaued already, is this possible? I have not been admitted to hospital although they are informed of my case in case I have to go in suddenly. Secondly, I have a strong burning sensation in my hands, fortunately this is the majority of the pain I am feeling, does anyone have any tips on how to help this, especially at night?
Now, for the support bit. I am mother to a lively nine month old baby boy and I can now no longer lift him up or sit on the floor and play with him. Worse than this I feel so drained of energy even the idea of playing with him is exhausting. I am feeling a huge amount of guilt about this even though I know realistically it is not my fault. Any words of support would be welcomed.
Please enlist friends and family to help. Being unable to walk or lift an arm etc. is nothing to feel guilty about. Be up front and tell those around you that you need their assistance to help you through this difficult time.
I wish you well and hope you are really through the worst of this.
Many hugs and much love! For the pain at night they used to give me Percocet or perhaps Gabapentin/Neurotin may help in your case. Ask the doctors about their thoughts between the two. Percocet more knocked me out rather than actually relieved the pain.
During the recovery and waiting period to see how far I would fall it was important to be willing to just let your body go and let it go through all the changes it needed to before true recovery could start. Cases vary so much it can be hard to say if you hit the plateau yet or not so keep a very close eye on your breathing and how your chest feels. If it feels like you have any weakness there make sure to alert the doctors immediately. (Some cases require help to breathe so it is important to keep an eye on that.)
For the support side, it really helps to have family and friends around for the physical help and please don't hesitate to vent here to get things off your chest. You would be surprised how it feels like you are the only one with a certain issue and then five more people come out and start saying the same thing!
I will be cheering for your recovery and keep us updated on your progress. Sending much love and many thoughts your way! I really hope you are already at the turning point to start recovering!
Hi, I'm so sorry you have GBS, I don't know what your insurance coverage is but you should be in the hospital taking IVIG and/or plasmapharesis treatments so that the GBS doesn't progress. Be cautious if the doctor told you that you have plateaued, without treatment, your not at a plateau level, your GBS is still alive and spreading. Remember its a virus and it spreads. Check with your insurance on hospital coverage and tell your doctor immediately, if he still insists your ok, go see another doctor, it should be a neurologist, if you saw a family physician, ask him/her you need a referral to a neurologist and go from their as soon as possible. Keep in touch with me and how are you doing finiancially? let me know on this as well for some links I can give you for support.
Freeze Karo Syrup in sandwich-sized freezer baggies. Hold them when your hands really hurt, then refreeze. Use as needed.They can be folded over your hands, etc.
Hi there! First off I'm very sorry that you have to deal with this. I was diagnosed in March so my experience is still pretty fresh to me. I am not sure if you have plateaued yet but I know there can be mild cases. I sure hope that's it for you!!! If it feels like it progresses at all though go to the hospital right away because IVIG treatment will make you plateau and it's certainly better to lose as little as possible. I can only imagine how you feel as a mom who is used to caring for everyone else. Do you have a good support system of friends and family at home? It's hard to let people care for you sometimes but lean on them because you'll best if rested. Spend as much couch and bed time with your son as possible so that you don't feel so guilty to not be running around after him! :) Try to stay positive but give yourself a chance to cry too if you need a release. And start physical therapy asap! Good luck, I hope you've plateaued and wish you the best! - Carol :)
My advice is the same as Babsmiracle. Get to a hospital and a neurologist now ! You should be treated immeadiately with IVGG or Plasma exchange. The longer treatment is delayed the worse your illness can be with a longer more difficult recovery. You are so young with a good chance of recovery, so you should be getting optimum treatment. If your physcian does not agree....get another opinion as soon as possible. I was diagnosed in Feb.2011 and had Plasma exchange twice a week. I was in hospital for 2 months and in a rehab hospital for another month. Once I was home I began to get weak again and the treatments were restarted for a year.I was then changed to IVGG last Feb. and I still get once IVGG a month. Let us know what happens.
I keep checking to see how you are doing. Having gone/going through this recently my thoughts are with you. I am assuming you are receiving treatment now.
Hello my name is Brian. My honest opinion if i was you I would get checked into a hospital. I was 17 when I was diagnosed with GBS. I am now 35. I do not eve know where to start honest but please get checked into a hospital. Then we can talk more:)
Hi everyone, thanks so much for your feedback. Of course my original neurologist was wrong and should have checked me into hospital immediately. Fortunately I did so myself tbe next day when I could no longer stand up. I was treated with IVGG straight away. My illness has progressed to the level that I cannot stand even with support and can’t raise my arms much above shoulder level but fortunately It has not affected my breathing so no ICU. I have had pretty much no change since 3 days so Ithink that it has now plateaued. I will see a neurologist again today to assess the extent of the nerve damage. On friday or monday I am being transferred to a rehabilitation clinic where I can start physio, so happy at the idea of seeing something other than these 4 walls! Pain so far has been bearable after the first two nights when I could finally convice them I needed more than paracetamol! But I suspect it will get worse in the recovery period.
I have a couple more questions, when recovery starts which nerves recover the fastest? Obviously i would like to recover my leg strength eventually but in the short term my hands are pretty useless now and it is driving me mad. Secondly, is there something I can already start doing to aid my my recovery?
Thanks for all the responses and the wonderful support
for recovery, generally it starts from the outer limbs and works it's way in. so ideally it starts in toes, to the foot, to the ankle, up the calf, etc... in the same way, tips of the fingers, along the fingers to your palm, to your wrist, up your forearm to your elbow, etc...
It seems a bit silly but i really tried to jump into reading books. my hands felt like jello and just holding a book was exercise and turning a page was a challenge. also, your therapists may have thera-puddy of different difficulty levels (like how hard it is to manipulate.) Writing and drawing also helped build strength again but writing really took a lot of energy from my hands...
My mom and sis hit up a local drug store and bought one of those stress balls for me to work on gripping.
When I was not in my physical therapy sessions I would work on stretching muscles and flexibility in general.
My experience has been the opposite. My therapist calls it the proximal nerves (I think), which are closest to the trunk and working it’s way out to the distal nerves which are in the hands and feet. Since March I’m now able to walk with braces for my foot drop but otherwise unassisted and I even do little short “runs” to show my friends how I’ve progressed! My hands are still fairly weak and with little dexterity but my OT has me working with Thera Putty, Thera Bands and all sorts of things. As I mentioned I still have foot drop, dorsiflexion, from weak ankle and some of my toes are still paralyzed. It may just be that it’s so individual but do all the exercises they give you and just really try to stay positive. I suggest you read No Laughing Matter by Joe Heller about his experience with GBS, you’ll be able to relate and he had it much more severely so you won’t get scared. Give that little boy of yours kisses if you can’t give him a hug!
>I have a couple more questions, when recovery starts which nerves recover the fastest?
Interesting question, as you can see recovery differs. I believe there are several sub types of GBS (four or five I think) that are identified on the type of recovery. I had the most common, paralysis starting in the lower body and recovering in the lower body first. If I had recovered from my head downwards I would have been in the Miller Fisher subtype. If you have any cardiac dysfuntion I think this was a different type as well as a type prevalent in china and mexico.
Perhaps someone can comment on the GBS subtypes in a non medical fashion without all of the technical jargon.
Please know I have been praying for you & your family. Let us know how you are doing. When you feel better we want you to add a picture of you holding your son.
UPDATE: So, unfortunately although all the doctors and the neurologist assured me that I only had a mild case of GBS and would be home within 6 weeks I developed difficulties breathing within an hour of being transferred to the rehab centre and had to be sent back to hospital for an emergency intubation followed by a tracheotomy. I eventually plateaued after 2 weeks when I was completely paralysed from the neck down and had partial facial paralysis. I remained like this for 4 weeks which was a very difficult time, especially for my son because I couldn´t talk or smile. Eventually I recovered enough strength in my chest to come off the canular and after 55 days in ICU I was finally sent to rehab. Now comes the positive part of my story, I have been here for 4 weeks and have made amazingly fast progress to the point where I can now get myself in and out of the wheelchair when it required 3 people and a lot of pain when I first arrived. I can also eat with a knife and fork and am even starting to walk with a walker. I feel very blessed to be having such a fast recovery and I hope it contineues this way. I am also in the process of rebonding with my son who now actually enjoys coming to visit me and I hope to be home with him soon.
I would like to thank you all for your advice and support, it´s really helped me being able to read other peoples stories. I would also recommend Holly Gerlach´s book, ´Happily Ever After´, she had a very similar experience to me and it was very helpful to read her account and reassuring to hear that it gets better.
I wish all of you very happy holidays and good health and speedy recoveries.
I had 2 rounds of 5 doses of IgGs but I continued to get worse after that so I don´t think it helped me plateau. Other than that I just got pain meds, lots of pain meds.
mdolich, thanks for the suggestion, I will look into it.
I also wanted to let you all know that I had acupuncture treatments and I would highly recommend it. I had standard acupuncture in the ICU to help with the pain and now in rehab I am getting cranial acupuncture combined with physiotherapy. This really gives me an energy boost and produces some amazing results.
