Sudden GBS… they said us..
AnonymousJanuary 20, 2011 at 6:14 pm
i’m italian and i came here to speak about very bad experience me and my familiars are living.. next to 13 days ago my mother said she had strange feeling at the end of feet and hands. She had a week, first, declaring flu and others pains. In less than 48 hours after the sleeping sensation on limbs started she become completely paralized, all the body less than head! Now she is in intensive therapy rooms of our hospital by 13 days, she can’t move anything, only eyes sometimes, a machine permits her to breath.
Doctors say us it’s too soon for have good news because GBS hase a curve that start to go down in 30-40 days.. My mother had 5 days plarmapheresis but took some blood problems, anemism, loss of platelets (maybe wrong translation for coagualing corpses).. Now she is going on IG (immunoglobuline in italian).
My answer was.. Never heard about so sudden GBS?? it has been really quick..
Doctors said us the “disease” started damaging noble parts of brain.. is it possible? GBS could do it?? permanently?
Do you know about italian famous hospitals/centres specialized in GBS?
Exists other healing methods than plasmapheresis of immunoglobuline??
Is it right the 30-40 days curve? Either if the GBS has been so quick??
Any other useful information is good accepted, thank you for all
AnonymousJanuary 20, 2011 at 6:43 pm
Sorry to hear about your mother’s condition.
It is a very difficult time for you, and it is even worse to deal with subtle medical terms in another language. I’d urge you to find sites, or people, that you can help you in your native Italian.
You might find this brochure helpful:
AnonymousJanuary 20, 2011 at 7:53 pm
I have heard of GBS happening so quickly. I do not believe it should affect any brain functions – unless she was deprived of oxygen for a long period of time.
Plasmapheresis & IVIG (immunoglobulin) are common treatments for GBS. Make sure they DO NOT try steroids. Steroids & GBS do not mix!
I have never heard of the 30-45 day curve.
I hope your mother gets well soon.
January 20, 2011 at 8:26 pm
So sorry about your Mama.
My feeling is that every one around her should remain as positive as possible. The paralysis is frightening and obviously it can be easy to think the worst.
I am grateful that my family and friends helped me grieve and laugh things off. At one point, I wanted to sell off all my guitar gear and quit. My wife who hates having a house cluttered with amps and cords wouldn’t hear of it. I’m glad because i have started to play again.
My neuro was also upbeat about the first 45 days. After that, I at first thought he was nuts. I had hoped for so much that I was disappointed.
Looking back, I believe he was right. I regained the ability to walk around a bit, make coffee, all within the first few weeks. i didn’t think this was a lot but from my hospital condition it was a great leap.
I have personally met people who have been in your Mama’s condition and have regained their lives. Stay hopeful, she could also be so lucky. It’s in the long-run that you all can deal with fears.
For now you may have to just be hopeful and look for reasons to be optimistic.
AnonymousJanuary 21, 2011 at 1:30 am
Welcome to the forum, it is good that you are looking for answers for your mother. First, I think she has a very normal case of GBS, many people who get GBS go completely paralyzed within 48 hours. 30% also need help with breathing, just like your mother. I think what the doctor means by the brain, is that some of the “Cranial nerves” might be involved, that is why she cannot shut her eyes. This is not brain damage & should heal in time.
The 30-45 days he is referring to is what is called the “nadir”, or the point at which the patient reaches their lowest or worst condition. After that, the healing begins. It sounds like the doctors are very good and know a lot about GBS. She is getting the correct treatments, but this illness takes months to heal. I know it is very hard to see your mother in this condition, but she has an 85% chance of making a very good recovery. She & her family just need to be very patient.
PS For those of us on the forum, remember that to this poster English is a second language. Pick your word choices carefully, trying not to use the medical jargon so many of us here are used to using, big words, or idioms or cliches. He seems very concerned about his mother, but to me it sounds like a classic case of acute GBS, or AIDP. That is a good thing…
AnonymousJanuary 21, 2011 at 10:49 am
Hi, welcome to the forums.
Sorry your mother is going through this. It is very hard for you and family.
Strange feeling in feet and hands is normal with GBS. GBS does happen quickly. After the 30-40 days your mother should start her recovery.
Recovery will be slow. She will need family support now and in the future.
Blessings to your family.
Please give updates on your mother.
AnonymousJanuary 21, 2011 at 10:56 am
I am sorry to hear your mother has GBS. As others have said, it does sound like a typical, severe case. I was diagnosed in 2005. It took 4 1/2 days from my first symptom to full life support. I was completely paralysed for about 30-45 days. I had the IVIG (Imunoglobulin) treatment. I also had cranial nerve paralysis. The GBS had affected most of my cranial nerves. I couldn’t close my eyes all the way. The hospital would put eye drops in and a gel to protect my eyes from becoming too dry. I spent a total of 2 1/2 months in the hospital. Four weeks of that time was spent in an inpatient rehabilitation section of the hospital. I was able to walk out with a walker. I spent another 4 months doing out-patient rehabilitation 3 days a week.
Your mother WILL get better. It will just take A LOT of time. Encourage her. If she can blink better one day than she could the day before, that is progress and healing. Tell her she is doing great. She will need a lot of rest, but she will also need encouragement to push forward as she heals.
I will keep her in my prayers. Let us know how she is progressing.
AnonymousJanuary 21, 2011 at 1:22 pm
I have GBS. I was in the hospital one year ago this week. It was very scary and I and my family were very worried. I am 61 years old and I am about 80% better. I can walk, drive, clean, cook, cut the grass, make wine and do just about everything I could do before getting GBS. Good luck to your mother, she will get worse but then she should get better. Remember she is scared and needs her family to be strong for her.
AnonymousJanuary 21, 2011 at 2:35 pm
Hello Frank from another Frank.
I had a very swift case where my first symptom was a swallowing difficulty at noon on one day and I had to have breathing assistance 22 hours later and couldn’t move anything by then.
Everything the others have said is good advice. In my own case, I was able to move a bit more after about 30 days, but I still needed breathing support for 9 weeks. I learned to focus on the progress made very few days which everyone experiences to some extent. It is good to celebrate those achievements rather than dwelling on all the things that one still can’t do.
AnonymousJanuary 21, 2011 at 4:23 pm
I really want thanks all of you from deep of my heart, it’s so good for me reading about your experiences and tomorrow (after translation) i’m going to tell to my familiars all you stories and advices: thank you.
Sorry for strange words i write, i don’t know english very well and must use google translator sometimes.
We lost hopes some day ago, doctors told us informations a little conflicting and my mother conditions getting worse every day was so bad; we can see my mother only once a day, for less than 5 minutes, after a little explanation of the day doctor (often different day by day) about her conditions.
Today my mother has been tracheotomized, after 12 long days of intubation, we hope this should help her to be less annoyed (sored). Immunoglobulin still.
After routine Xray control doctor find a starting pneumonia, apparently caused by artificial breathing; to prevent it get serious they started to bring my mother large spectrum antibiotics. Doctors said us the higher risks for her are infections now, hope she can resist enough but the intensive room where she rest don’t feel so sterilized, feel like everyone can enter..
This evening she couldn’t move nothing, neither eyes (yesterday evening eyes moved a bit) not fine to see.. Our worry is: she can undestand now wen we speak to her? Is she conscious?? Could only imagine how bad does she feel in her paralisis condition.. She not deserve it, in her life always tought to the others, always cared about sick or old familiars.. it’s so sad.
Doctor today said us by some days don’t give her sedation because is pratically in comatose/vegetative state.. Who tried (i red Frank, Harry, Tonya) this can confirm it? How was you? conscious or not? remember nothing?
Thank you a lot again
AnonymousJanuary 21, 2011 at 4:55 pm
Keeping her sedated at this point is actually better for her. I was sedated while intubated and for a little while shortly after I was given the trach. Because of this, I do NOT remember the worst three weeks of my life. I would like to remember, but have been told it is better to not remember. I will say, that even though she is sedated, she may not remember everything that is going on around her, but some things will make it to her long term memory. If she is allowed, it is a good idea to play inspirational music or whatever type of music she likes, in the room. When you are allowed to see her, tell her she will get well. She knows you are there and can hear you. Having the trach will make caring for her easier. Make sure they are turning her so she does not develop bed sores. Have the therapists remember to stretch her back muscles. I also had a little pneumonia. When they took x-rays every few days, I remember them tilting me forward to place the film behind my back. It HURT!!!! I was recieving range of motion therapy on my arms and legs, but they didn’t stretch my back muscles and I could feel the pain every time I was tilted for the x-rays.
Since she is still receiving the IVIG, it is normal for her to continue to get worse. Do not worry too much. She WILL get better. I will keep her in my prayers.
AnonymousJanuary 21, 2011 at 11:42 pm
Tonya & others,
I just wanted to thank you for both of your excellent posts, I think you have shared exactly what Frank needed to hear. Once it is correctly translated for him, what you have said will help this family out greatly. This forum can be so wonderful at times, it makes me proud to be a part of it.
AnonymousJanuary 24, 2011 at 1:06 pm
Sorry I have been away from the forum for a couple of days. My family had me sedated much of the first couple of weeks too as they thought I was in pain. I was definitely uncomfortable, that is for sure. When the legs are stuck in the same position, it quickly becomes uncomfortable so make sure that there is good pillow support for the lower legs when she is on her back or side.
The most frustrating part for me going through this was an inability to communicate. For that reason, my family and friends were with me for much of the day. I guess being in Nairobi where rules could be overcome was useful for that. But I could move my eyes so I was able to repsond that way. We also devised a very clever board of letters and colors so that I could spell out words by moving my eyes. If I didn’t have that way of communicating, the whole experience would have been much worse.
I also had pneumonia twice and was able to beat it, even though I was obviously very weak. It will help that your mother now has a tracheotomy so that they can more easily suction secretions from the lungs.
Let us know if any other development happens. We are all hoping for the best!
AnonymousFebruary 5, 2011 at 4:09 pm
Thank you Tonya. My mother this week started to open her eyes, doctors say that she answer to their requests, oper eyes, put out tongue, move head.. little things but seems great thinking about how she was a week ago, in vegetative-come state. Today doctor gave us the new that she started to feel pain sensations at the limbs, seems she can feel it.
Anyway in the visit hour we can see her but she seems still a bit confused, she watch us for some time but after a while she need to close them. We speake to her but sometime feel like don’t understand us…
We continue to hope.
AnonymousFebruary 5, 2011 at 4:32 pm
That is wonderful news!!!!! She is taking the first small steps to recovery. Your mother may be confused during your visits. It can be because after a little while, she is tired and can not concentrate any longer so seems confused. It could be caused by any medications she is on.
You mentioned that she is now feeling pain. If she has not already been started on pain medication, I would suggest that you strongly want her on a pain medication like Neurontin, Cymbalta, Lyrica, or one like these. It is important to keep her comfortable during this recovery time. The more pain she is in, the less she will feel able to do and she will become tired faster.
Please keep us updated and I am so happy that she is starting to show improvements. As I have posted before, EVERY small improvement is a huge step at this point.
GBS May 2005
AnonymousFebruary 6, 2011 at 8:36 pm
You’ve been doing very well in getting your ideas, concerns and frustrations across to us. Don’t worry about that? Just keep trying!
That she is improving, tho slowly? IS good news. Just remember tho, that even blinking her eyes can be an exhausting effort. This condition makes you sooo tired! For example, you take a sip of water? Then nap for 4 hours!
I do have to ask tho? Are the docs getting her to sit up? I understand that this is very important to both being able to breathe better [avoiding pneumonia] and also to improve overall body circulation. Also, have any physical therapists started to do exercises on her arms and legs? Just keeping THEM moving is useful in the long run.
Remember, that with this sort of immune system assualt to a person’s body, it will take a long time and a lot of work, exercise, and encouragements to get thru it! Most of us never just ‘get better’ then, up and out of bed. Wish it were different, but it is not to be.
My heart and my prayers are with you, your mother and all of your family.
Please, please keep us up to date on her progress! We care!
AnonymousMarch 13, 2011 at 6:20 pm
64th day for my mother into inthensive room of the hospital. Se is well, now she is without tracheo and can speek quite good. She is able to move head and her arms quite good (fingers only a little but that is enhanceing). Today started little legs movements. She is a strong woman and psycally resist enough about long days into intensive room, expecially now that should speak and communicate with doctors and with us. Still doing reabilitation gym, they put her for long time in a sit position.
She has a little problem for evacuating the poo, it’s difficult for her sometimes and for example yesterday doctors need to make a little work to free her about it… often she suffer bellyache.
Also has a little deficit ad face, they said the seventh facial nerve a bit damaged: a part of the mouth not opens very well and cannot close at all left eye…when she sleep left eye remains opened a bit and it’s a little problem (dry). We hope it will heal with time.
Anyway.. seem it’s getting well day by day 🙂 but thinking now about her worst condition, more than a month ago… we spoke with doctors,expecially with neuro doctor, and seems that my mother escaped by a big probability of death; it’s so because in the worst week she went into a comatose state, GBS of course started to penetrate the brain…strange for the syndrom but TAC showed it… only after corticosteroids(third cure after plasmapheresis and IVG, the both apparently unuseful) the process started to back.
Anywway now me and my familiars start to see a better future. I want thanks all of you for the support 🙂
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