All about Guillain-Barré syndrome: Readers' comments!

This page contains letters from visitors to the website. If you have a specific question about GBS you need an answer to, or have good advice to pass on, or comments - please share them here!

Hi there Sharon,
I wrote to you back in October and it has now been over a year that my brother has been for the most part paralyzed. He originally got GBS on 18-Nov-02 and has been on a ventilator and feeding tube since then.
When he was first in ICU he had the IVIG treatment and it did not seem to do anything and he also had the plasmaphareses (not sure of the spelling) treatment as well. He is now in an extended care facility and just yesterday had some kind of test of the nerves to see if the doctors could tell if he would improve any more or ever be able to get off the ventilator.

Today my mom, who is 81 and stays at his bedside around the clock and only goes home two times a week, called me in tears because his doctor said that the results of the nerve test were not good and she did not think he would ever get off the ventilator.
We are desperate for any help or ideas that anyone can give to us and we are also looking for some Guillain Barre Syndrome support groups located in the Southern California (Long Beach or maybe Orange County) area. I just have not had any luck in finding or reading about severe cases of GBS.
Thank you so much for your time and your caring.

Jane Baker
Lakewood, California
12.2003

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my name is Cynthia Contreras
my 11 year old son has GBS or maybe CIDP we still are unaware do to the fact that its been since June and he hasnt gotten better just stronger so they think he may have CIDP so they just started him on IVIG monday... and hes been getting really bad headaches from it and throwing up we just want to talk to someone whos gone through it and has gotten better. If you can email us and we love to hear your stories.. Thanks so much for your time and consideration..... God Bless
Cynthia
12.2003

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respected madam,
madam i guraduate in prosthetics and orthotics sciences and now orking as internship fellow in pipos patient care centre which the only institute for rehabilation in south asia located in pakistan on help of german goverment.madam last week i deal a female patient havingGBS.i make knee ankle foot orthosis for that patient start standing but i m not saticfapy from that being humanbeing i want that patient must take full treatment but due to the finanical status she can't take treatment outside pakistan.now i want to do some thing for that if i sponsor her to your institute for treatment.what will be the procedure and cost of that.please informe as soon as possible.i shall be very thank full to you for this act of kindness.
with best regards.
asad-ullah khan
12.2003

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My little 6 year old daughter has gbs since february the 5 th 2003. She has a very severe and rare case, with axonal damage Her body was a total meltdown. She could'nt breathe, her eyes were badly effected and she couldn't swallow.
On top of a GBS (not Miller Fisher), she has ADEM - Acute Dessiminated Encephalomyelitis - this means her central nervous system was affected as well as her peripherical nervous system. ADEM is mostly seen among children but rarely combined with GBS. She wasn't in a coma, as it sometimes happen with this type of attack. Such attack can appear on adults also, but rarely. From what I know, it takes longer to heal because the nervous system is totally affected.

She is still hooked on a ventilator, 9 months later. Her respiratory
muscles are starting to be innerved, but not enough to wean her off the vent entirely. She has recovered her capacity to swallow and her eyesight is gradually coming back. Also, her facial muscles are no longer paralysed. She can move and hold her head. She has not started to move yet but there is involuntary movements in her legs, feet and torso.

In the early stage of her sickness, she received immunoglobulin twice, and steroids (prednisone?) especially to stop the progression on her ADEM. Almost the next day, she started to see a little once again, she could swallow. But the immunoglobulin seems to have no effect on her GBS.

We are really worried for our Juliette. She has been in hospitall awat
from her home for so long. If anyone know of similar attack, please send us information to help us pass through that terrible nightmare. Thank you for putting our case on the website.

Johanne
11.2003

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Can someone being anemic for about one year be more likely to develop GBS ?

Thank you,
T. Robledo [case history]

Webmaster: Problems with anemia may occur in patients being treated with IVIg, but are a bit more common in CIDP patients as they are treated with IVIg on a more regular basis than are GBS patients.

i suffered from severe attack of LGBS in april 1992
i was on ventilator for three months.
some how i managed to survive
i was admitted in AIMS hostotal new delhi.

Webmaster: Congratulations, Munish! I wish you all the best in your continued recovery. Please see 'Support Networks' for a contact person in your vicinity, who can give you support and inspiration.

I HAVE A RELATIVE IN DENMARK WHOSE 2 YR. OLD WAS SUDDENLY
TAKEN ILL WITH THIS ILLNESS.
COULD YOU PLEASE SEND HER INFORMATION IN THAT LANGUAGE
THE PARENTS AND 10 YR.OLD SIBLING ARE DEVASTATED.
HE HAS BEEN HOSPITALIZED FOR A MONTH.

PLEASE ACKNOWLEDGE THISS EMAIL SO I WILL BE ABLE TO SEND
YOU HER MAILING ADRESS TO SEND ANY LITERATURE TO HER.

SINCERELY,
ANGELA THOMPSON
REGISTERED NURSE NEW YORK U.S.A.
10.2003

Webmaster: I have no litterature to send, please give her the address to this website. There is a Danish support network she can contact for more information and support.

My brother developed Guillain-Barre Syndrom November 18, 2002 and became totally paralyzed. It is now more than 10 months later and he is still mostly paralyzed and still on the ventilator. Can there still be progress for him and for how long can it be and there still be improvements expected for him? Can he still improve for years to come? It is very discouraging that he can not move his arms, legs, fingers or toes or even breathe on his own yet.
Thank you.

I do not know where to start about GBS. I know that a lot of people seem to be getting it or there is way more stories about it. I was hit with GBS on 9.12.1993 and my family was going crazy to find out as much as they could.
Mine started after having an upper respirtory infection. Then after feeling well I started to get lower back pain. That was just the beginning. My story is very long, but I know that by having family that was very supportive and nurses that were very caring and being strong willed myself I made it. No one would take no for an answer when I didnt want to continue. I was only 29 and a single mother of two boys. I still have so many questions and also so much information. I am in awe by just how many people are out there now that have experienced GBS one way or another.

I can tell you all that by not having high top sneakers put on my feet has left me with drop foot. I wear braces so I can walk with out tripping. I still have paralysis in the left side of my face. My right hand (the fingers) are crooked. I get tired a lot. There are so many things that I have that others have had. The one think that we all do have in common is that we are survivors.

Beverly Noonan [case history]
Massachusetts
10.2003

Webmaster: Beverly, thanks for writing in! Yes, the ease of communication by internet certainly seems to be helping more people share their stories. Please check 'Focus on Post-GBS residuals' for tips from other patients for after-GBS relief..

I'm a 63 year old female. I got GBS June 27, 2002. Hospitalized 5 weeks (3 weeks in ICU) I was paralized up to my neck. I had had an eye infection one week prior to onset. My paralysis lasted til Sept. 15, 2002.
I have been in two rehab facilities until July of 2003. Then I tried to go home. By then I could walk up to 75 feet with a walker. However I still cannot bring myself from sit to stand unless my knees are blocked against something solid. I live with my daughter in a tri-level house with no bath or bedroom on main floor. I couldn't maneuver wheelchair on thick berber carpeting and my transfers were dangerous. So after 2 days I went to a nursing home. I was there 7 weeks. Now I am in an assisted living facility waiting to get into a handicap apartment.
My insurance quit covering my therapy. At the nursing home I paid for sixty 15 minute sessions at $48. per 15 minutes. I can't afford it anymore and now am going into subsidised housing. Does anyone know how I can get further therapy til I can get on my feet?
Except for lack of strength my arms and upper body seem to have recovered. I never was on a ventilator. Sometimes I almost lose hope of recovering enough to get up. Before I left the hospital one night my right foot and leg felt like it was on fire. The next night it was my left foot then leg and all across my back. It lasted 45 minutes then suddenly stopped. Could this be when the myelin was being destroyed?
I've had a miserable 15 months made even worse by abusive healthcare workers along the way. Thank God for the ones who were kind. I have read and reread "Bed Number Ten" and can relate to all of it. If anyone can help answer my questions I will be so grateful.

About 3 months ago, I began to get a pins and needles feeling in my feet. After a week, it had moved up my shins, to just below my knees. The unusual thing is that this feeling was only on the fronts of my legs.At the same time, I began to notice weakness esp in my legs. I went to a doctor, who told me to soak my feet.

My condition remained like this for a month, at which time the pins and needles feeling worked it's way up past my knees, at which point I sought more medical treatment. I was refered to a neurologist and have had blood work/MRI, am waiting for the reults now. In the last 3 weeks, my condition has degenerated precipitiously, The fronts of my legs are now totally affected (the backs are still 'normal'), I can only walk short distances, and get tired easily. My leg muscles feel stressed (esp quads) all the time. If my situation gets much worse, I'm going to the Emergency.
A friend who is a nurse has suggested that I should investigate GBS.
If you have any opinions or questions I'm happy to hear from you.

Webmaster: Peter wrote in later and reported that he is undergoing treatment for pernicious anemia.

On January 8, 2003, my 1½ year old son Leif was diagnosed with Guillain Barre Syndrome. The symptoms started to set in after New Year's and countless doctors told me that he had a cold and an ear infection and probably doesn't want to walk because of invertigo. By the time he was completely paralyzed, I refused to take "an ear infection" as the reason and took him to emergency. They immediately sent us to the ICU at the Vancouver Children's Hospital where he stayed for two days. He was then transferred to the Neurology Ward where he was cared for the rest of the week. They used IVIG on him and he rapidly got better.
However, on June 14, 2003, he started to complain about "owies" again and started to buckle at the knee. I brought him back to the Children's Hospital and they gave him another dose of the IVIG and attempted spinal taps 5 times until they finally got the sample. Leif has gone through so much and I'm wondering whether this will ever end. He's walking and running now but there are times that he falls for no reason. I wish I could be assured that he will get better %100 one day. I'm constantly worried about him. On Aug 8, next week, he will be seen again by his neurologist.

Sandra Bouchard [case history]
08.2003

Please tell me all about Guillen-Barre disease, the symptons, what causes it and what is it. My cousin died from it and I would like to know about it.
Thank you,
Roger Rice
07.2003

Hi my name is Bazza, Is there anyone out there who can help me? I had an industrial accident in 1999. I fell into a inspection pit approx 2mtrs deep. I suffered multiple injuries including a suspected wedge fracture to my spine. A week or so later I started to experience pins and needles and numbness in my hands and feet, over the next few months my condition worsened to the point where I started to collapse. Following hostpitalisation and numerous tests I was then diagnosed with CIDP. As there is insufficient information and lack of research into trauma related CIDP I would be interested to hear from anyone who has suffered a trauma especially an injury to their back and ended up with this condition.

Bazza [case history]
07.2003

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This will be short since I recently got back on the computer after three months and am not strong enough to write long emails. I was hit by GBS for the fifth time on March 14, spent a week in the hospital and just was able to climb my stairs last week. I still have home care three times a week, can't shower or drive yet, etc. It came on full blown in the middle of the night, and started with low blood pressure...I had to call 911. Then the paralysis began. BP has been a big problem...lowest was 60/16. I'm now on cyclosporin to discourage more relapses. I lost my job because I was out so long.

Lauri Lowen [case history]
Redmond, WA
GBS 1996, 1996 again, 1997, 2001 and 2003

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HI MY NAME IS UBAID.
THANK YOU FOR YOUR CONCERN ABOUT MY ILLNESS AND RECOVERY. I ALSO THANK YOU FOR YOUR SUPPORT THROUGH OUT MY RECOVERY.
LOVE
UBAID, 11 yrs. [case history]
06.2003 South Africa

Webmaster: Ubaids parents have corresponded with me about their sons illness, and between us, we've emailed a lot between South Africa and Copenhagen. See the readers comments further down this page as his dad, Feroze, and mother, Fatima, kept readers updated on Ubaids progress.

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Found a very moving poem about GBS on the internet, that I'd like to share here - click to read "Tantalus".
Suzanne, Denmark
06.2003

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I too had this very odd syndrome. I am up and well today, because of very strong will and a 1½ year old baby. I had to force myself and I remember the tears and anger and yes most of all embarrassment. People looking at you like you are retarded not a person. I am stong today and yes I still get tired easy. I believe my believing in God made me be able to get through this.
It is going on 19 years now since I came down with Guillian Barre, but today I really look at things as small as a bird on a wire, and love every moment.

Cathleen S. Smith [case history]
PA, USA
06.2003

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Just to let you know that Ubaid started off at school today. Hope school /most of his o t/ pt will take place there.
Quite facinating talking to headmaster - 2 kids that were pupils that attended Hope school that went down with gbs. An immediate area where they reside crops were sprayed. An answer to thier gbs: "poison in the air".
regards
Feroze, South Africa [case history]
05.2003

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Natalie is continuing to grow stronger. Her balance is still off a little and she is still having pain, mostly in the evenings. I think the best medicine we have found so far has been getting her back around her friends. We were all isolating ourselves, and she was afraid (embarrassed) to get out in public. But, her pediatrician urged us to get out with her (probably the best advice we’ve gotten so far).

The next best medicine has been the non-judgmental approach the physical therapist has taken (a definite lesson learned). He told her he would meet her where she was, and it would be up to her how quickly she regained her strength.
She has taken his advice to heart and has been religiously practicing her exercises. She even has me and her little sister doing the exercises with her!

I am very interested in receiving your newsletter. My 12 year old daughter Natalie has had a roller coaster existence since January 2003 due to a mysterious illness, which now appears to be MFS. We have been to the hospital twice and numerous doctors, who have said "something physical is going on, but we’re not sure what it is”. I live in a rural area with your basic general practitioners, and they have been baffled.

Fortunately, my daughter seems to be in the recovery phase now and is beginning to walk on her own. She is no longer having the intense pain 24/7 and the sensitivity to touch is reduced.
Many medical people have accused her of malingering, and said her symptoms were psychiatrically based. We have had very few people take the time to listen to us, regarding my daughter’s wide and varied symptoms, which seem to fall neatly into the GBS/MFS category.

Natalie does not have an official diagnosis yet, and may never have one. I am weary from struggling to get a diagnosis. At this point, all it would serve is my ego, needing to be right. She has ridden out the worst of the storm hanging on to a bottle of Motrin, my arm, and the prayers of many.

We often hear about children who are very ill and say “I don’t know if I could handle my child going through that”. One thing we all have in common is the fear of the unknown… Now we know. We can handle what is set before us. The lessons we take with us from this experience will shape the rest of our lives and countless others’ lives.

I have begun to work through the anger at the medical community, realizing most of them have seen many more anxiety attacks than GBS. We have all learned so much, especially to listen to our children and appreciate every healthy day we have.
Thank you for your web site. It has helped me tremendously.