Quantcast

Living with Polyneuropathy CIDP, GBS, & CMT

Guilliane barre syndrome


#1

My mum has been told she has guillain barre syndrome . She was admitted to hospital 6 days ago as she fell when her body just wouldn’t let her stand anymore . She has lost all feelings in arms and legs and had pins and needles . She has been given the drug I think it’s called hemoglibin it will be day 5 of taking the medication tomorrow .she has told me she can feel her toes a little to wriggly them slightly . Is she in the way to start to recover . I am so worried . Thankyou


#2

Hello Donna,

Your mother's symptoms sound like the "classic" lead-in to GBS. It sounds like she was diagnosed quickly, and had treatment started quickly, which is great. Early treatment is the key to keeping the effects of this to a minimum. If your mother could not previously feel her toes or wriggle them, and can do so now, that is also great news, because it means she has already "turned the corner," and is on the recovery side now. Try not to worry, it sounds like your mother is receiving the right care, and she is responding well to it.

Just keep in mind that recovery from GBS is SLOW. Have a lot of patience, and be there with lots of love and emotional support. Your mother will need it! Good luck and best wishes!


#3

Hi Donna, I know this is a scary time for you and your mother, but she is so fortunate that this was diagnosed quickly. Stay as positive as you can be with her even though she might have some slight setbacks at times. She might sometimes feel as if she is not making progress or not making progress fast enough. You will be able to see her recovery faster than she will. But like Lance B. said recovery is slow. In fact many of us who have recovered from GBS know that GBS stands for Getting Better Slowly. Keep the faith.


#4

Thankyou to you both for your help. I feel more hopeful now . I am so great full to you both for replying to me . I will keep you updated when there is some improvement .


#5

Hi Donna - a girlfriend of mine was struck down with GBS in November and was paralysed down her left side and lost feeling from waist down and Bell’s palsy symptoms (dropped face and eye on one side). Like your Mother she got treatment quickly and they did a haemoglobin transfer ( I believe) and she spent 60 days in hospital and rehab. They put her on Pregablin and Ora morphine. I’m happy to report she’s making a good recovery and back in her own home three weeks ago and although she still has pins and needles / fizzy feet and ‘heavy’ legs - she’s now walking with a frame ( on her very weakened legs) and this week has been using crutches and although hubby moved the bed downstairs she’s gradually been practising climbing the stairs ( thanks to paying for some great Physio to come into the home to help her and give her confidence to manoeuvre in different ways). This evening she was going to try and get upstairs to bed ( with hubby’s help).
Her dropped face and eye is almost 99% back to normal and she has regained feeling in her lips and seeing her progress each day/week is very encouraging. My friend also had double vision until last week and couldn’t even hold a book as hands still weakened but by using a Kindle with enlarged print she has been able to read too. I can’t tell you what an immense relief it is to see her recovery - just be there for your Mum Donna and with patience and determination she will get better bit by bit. Once she starts to see a Physio in hospital do make sure she religiously does all her exercises (facial and to strengthen her limbs). My friend said that having hubby massage her legs and feet every single day when he visited her in hospital in the beginning really helped too. Good luck and just be there to reassure her that she will get better. Please try not to worry and stay strong. I hope you didn’t mind me saying all this but I was so very worried about my friend and wouldn’t have believed she would make such a good recovery in 3 months… Although still a way to go yet before she can build strength and walk unaided. My friend is 61. Good luck x


#6

Aww thankyou so much for telling me this .my mum was due to go into a bungalow in two weeks time . So I will be moving her things into there ready for her to come home to in time . I am feeling lots better tonight now and hopefully may get some sleep thanks to all of your help . I will be there to support her as much as I can. She is a very determined lady and will definitely do the physio as she is a very active person usually . Already loving the support from this group when I felt I had no one to talk to who understands this it’s great to have this support thankyou once again x


#7

Hi Donna! I'm so glad she got treatment so early. I hope that things continue to go so well. It takes some time so try to stay positive when it seems like improvement is slow. Massage helped me so much when I could hardly feel my legs. Once I started getting better, PT really helped too. Just make sure that she gets with someone who has experience with treating GBS patients. As I started to do more, I experienced more pain. I was fortunate to fall into the path of the right Physical Therapist. I think that has helped my recovery tremendously. Your support will be the strength that she needs to get better.


#8

Thankyou today I have been and try say she is into week 3 of the illness . She has low salts and has to be moved nearer to the nurses station . Still worrying incase she takes a bad turn . Hopefully she is on a turn into the recovery process . I am finding all your comments so supportive . Makes me feel more at ease hearing your stories of success and understanding the recovery process more . The only way I’m getting through this is with all your help and I thank you all so much . All your comments are really helping x


#9

Mum has taken a bad turn yesterday blood pressures dropped and being sick a little blood . Stablized at the moment but needs to go down for a camera to see what’s happening inside . My mum has now finished taking the immoglobin . What do they normally do next . Worried sick at the moment . Thankyou for all your support x


#10

Donna, so sorry about your Mum, but does look like she got diagnosed early on and started receiving the IVIG treatments. After I had the 5 treatments, they thought I was getting worse and needed the plasma pheresis. But I did not as the neurologists determined that I was turning the corner. After about a week of watching me and some very light therapy I was sent to a nursing home/rehab facility for rehab. I was too weak for intense therapy. I went thru a rough time there and ended up having to have a colostomy (this had nothing to do with the GBS). I then was transferred to another short term rehab facility and it was very good, but after 16 days I was still not ready to return home. Then was transferred to a Jewish nursing home/rehab facility and they were great! I stayed there 7 more weeks before I was actually up on my feet and able to walk with a walker or use a wheelchair.. All together I was in hospital/rehab facilities for 4 1/2 months before I was able to return to my home. I then went to out-patient rehab for another 4 months and then went on the fitness program for a while where I paid them a monthly fee and went as often as I wanted. I have not gone for some time now, but need to start back. It is very important to be very patient and to find the right therapists. I was fortunate to do that and some or should I say most of them had never worked with GBS patients before, but they were very good to find out all they could about my condition while working with me. I am much better than I was but not a 100% and may never be again. It has been 2 1/2 yrs since my diagnosis of GBS. I still use a cane when I go out and still use my walker some in the house. In the house I have things I can reach out and touch to steady me. My feet and lower legs are still numb somewhat and i still have tingling in various places on my body. I can drive again when I need to or want to, but still difficulty getting in and out of the car. I will soon be 74 yrs old and do not have to go to work anymore, thank goodness. GBS is a very difficult disease and the medical profession as a whole knows little about it. You have come to the right place to get help and understanding. Hugs & Blessings for you and your Mum.


#11

Thankyou for telling me your experience all these help me understand what is happening to my mum . We are going to speak to the main consultant tomorrow so I am hoping he is going to tell us how she is doing and if the immunoglobulin has helped her . Hoping her salt levels come up as they are really very low at the moment . We should also find out why she had some bleeding in her tummy . Hope it is nothing serious . I know the recovery of her getting back on her feet will take time i can handle that but it’s the not knowing what is happening to her that is so worrying and upsetting . Thankyou for sharing your stories I am truly grateful and glad that you are on the mend . X