All about Guillain-Barré syndrome: Readers' comments!

This page contains letters from visitors to the website. If you have a question or have comments or good advice to pass on, please share them here! All emails receive a personal reply, the answer you see here, below each letter is a condensed version.

Hi, i am desperate for your help regarding gbs. my friend is suffering from gbs since 3 years. no one knows the cure,my stright question to u is is there any cure for gbs, he cant breath cant move. a machine is berathing for him. please please if any thing can make him fit please tell me.
regards
mustafa [case history]
12.2004

Webmaster: I have requested Mustafas address and phone number, so I can try to put him in touch with a local GBS network that can assist his friend.

I woke up on 11th march 2004 to find that I could not get out of bed. By the following morning I had been intubated and attached to a vent. Four weeks later I was changed to a trachy and gradually weaned off the vent. Moved to rehab and discharged July.
I can walk unaided but have "pitting oedema" in both feet and legs up to high calf. I have foot drop in my right foot, my hands are very weak. I am not complaining as I see and read about people much worse than me, but I would like advice on how to correct foot drop and suggestions on why the oedema is so bad.
Thankyou

Dave Laing, Scotland [case history]
11.2004

Webmaster: A multinational help effort ensured that Dave was put in touch with the expert help that he required in a very short space of time. Thanks to the readers and health professionals who were involved!

Descubrí la página a través de un foro en español de pacientes de GB o familiares que permenentemente están intercambiando experiencias y también siendo solidarios con el resto de los afectados.La fuerza que imprimen aquellos que están sufriendo esta terrible enfernedad es tremendamente importante y un influjo de fe para la recuperación.
Soy de Santiago de Chile, y tengo un hermano (48) que desde hace cuatro meses sufre de la enfermedad, producida por una fuerte diarrea cuyos resultados de laboratorio arrojaron que la había producido la bacteria campilobacter ju. Es un GB severo ya que le afectó los axones quedando paralizado completamente a los pocos días habiendo permanecido en la Unidad de tratamientos intensivos de una clínica por un mes, pero gracias a Dios sin cenectarse a respirador. Fue tratado con inmunoglobulina y actualmente solo el tronco tiene movilidad , continúa hospitalizado, no pudiendo mover ni piernas ni brazos.
Está en manos de neurólogos y haciendo kinesoterapia y con fisioterapeuta desde el comienzo, pero los avances son lentos.
Mi pregunta concreta es ¿existe alguna clínica de recuperación especializada en GB y en que parte?. Sabemos que hoy en su estado es difícil de trasladar pero cuando sea posible estamos dispuestos ha efectuarlo. Nos han informado que en Cuba existen al menos mucha calidad en recuperación a través de fisioterapia e hidroterapia.

My elder son, Rishabh, 12 yrs, suffered from GBS when he was 7. He recovered fast as the same was diagnosed and attended to very quickly. But he is suffering from foot drop in the left foot ever since. Though his doctors at that time had suggested that he might recover fully in the puberty years, it doesn't seem to be improving. One solace is that it hasn't woresened either. Pls let me know if something can be done for him to completely recover as he is very interested in sports and his foot drop does not allow him many things.
Thanx,

Bhavna Chaudhary [case history]
12.2004

Approximately 18 months ago i came back from a weekend trip from the snows. Around the 2nd day of coming back home, I began to experience the tingling in my toes and fingertips, thinking I had over exerted myself from the weekend.
I went back to running my business roof tiling and began to notice that anything I picked up my knees would begin to buckle.
The next morning I woke up to realize that I had no feeling or control over my legs, abdomen, arms and hands.
My wife rushed me to the local doctor who luckly diagnosed me with GBS. I was rushed to the emergency ward.

After 5 plasma tranfusions and 2 weeks in hospital, I regained all feeling in my body. I attended 2 days of physio and I went back to work after 2 months. I feel fine now and all the nerve tests came back with the green light, but I still feel tired alot of the time.

Dear all....well i was serching the net for any source of lihgt to lighten my way and my family's way and i founf ur website...actually my dad is suffering from GB from 8 months now....five of tem hooked to a ventilator ...we spent 5 months in hospital,,,at the icu my mum and i used to spend the whole night with him sometimes falling on his bed form the tireness and others staying the whole night awake cuz he suffers from rapid heart rates or hipotension and other things,,,,it was a miracle that the hospital allowed us to stay with him at the icu,,,,my uncleI(his brother) used to come in the afternoon shift to take care of him till we come back at night again,,,a week ago we tansfered him home on a home ventilator which we spent months looking for it ...its a great risk i know...we are terrified to have him with us a t home on a vent where doctors are not available all time...but we had to do that because we were all going through a hih depression mode which was capable of killing us....i wonder wt is the end we pray for him day an night and everbody does...i am sure God will noe let us down.,..i beileive so much in God....we re thank God muslims and we know that this is faith which we had to face it and that by praying this disaster will find its way out soon....but wt scared me is to find people suffering from gb for 9 years and less....i thouhgt its not a chronic disease..i hope all gb patients cure and all the patients generally....its true that its a huge nightmare for the patients families...our life has gone upside down everything changed....i hope dremas will come true soon for u all and ur patients cure as well as my dad...

A very good friend of mine contacted GBS about 6 weeks ago. He is recovering now but still cannot walk. He is 38 years old. Would a very good multivitamin be bad for him in the healing stages? I appreciate any comments.
Thank You,
Butch [case history]
08.2004

Webmaster: Please do check with your friend's specialist before he begins taking any dietary supplements.

i am a 22 yr MBBS student having residual foot drop due to an attack of G.B syndrome 10yrs back. Can i still recover from the problem? What are the current treatment available? Please give me the name of the hospitals dealing with such treatments.

Webmaster : I am creating a page on residual foot drop - readers please email me with your experiences and tips!

Hi, My name is Darlene, when I was 18 months old I had GBS. (Aug 1960) I stayed in the hospital for about 4 yrs. As I eneded up in a iron lung machine. See, from my lungs down I was paralyzed for several years.
Now I find myself with problems with my legs not moving, and my arms not doing anything, I am dropping things that I normally hold onto. My legs hurt for no reason, and I habve problems walking , I stumple over nothing. My brian tells my foot to pick up , but my foot just stays there. Dumb foot/feet. I can not pick up heavy items anymore. My eyesight is getting worse at times Especially to light. I see double everything, and I think that I need new glassess after only 6 months with them.
My Neuro doctor does not beleve that it is the GBS , but yet he has me on all sorts of meds for neruopathy and myopathy.( I think that's how it is spelled, if not please forgive me.
My question is can this be GBS?? I had a gastric bypass 3 years ago. My sugar goes up and down, and I suffer from vitamin difficeney .Could the surgery triggered this as it was about 6 months after the surgery that the syptoms occurred. Please give me some answers as my doctors all think that I am crazy!!!
Thank you for taking your time reading this. God Bless...
Darlene [case history]
06.2004

Hey there,
I am a 25 year old professional dancer from the Netherlands now recovering from GBS in a rehabilitation clinic. It all started 20 December 2003. I was in the ICU for over 6 weeks, and reliable off the respiratory for over 4 weeks. Now I am climbling back. I still cannot walk.
I am looking for other dancers/sportsmen who had/have GBS to share experiences with and maybe learn a little about there rehabilitation-programme.

Hi,
My name is Cheryl. I saw your website and just had a couple questions. What type of doctor is usually seen for GBS? A Neurologist? A Rheumatologist?
I am experiencing great weakness in my legs and arms but no trouble breathing at this point. Do you know if that could be GBS?
Thanks so much for the feedback.

Cheryl [case history]
02.2004

Webmaster: Please consult your physician as soon as possible. Mention your concerns that you may be suffering from Guillain-Barré syndrome. He or she will examine you, and if your symptoms match those for GBS, you will be sent to a neurologist to have this diagnosis confirmed.

Hi! My name is Christa and I'm 29 years old. Great was my shock when I learned I had CIDP as I never really get sick - just the winter sniffles now and then.
In May 2003 my feet started feeling numb and my GP said I had winter's feet. I found a neurologist and he did some tests as well as scans and Lumbar punch. He then diagnosed CIDP in August 2003 and we started Polygam treatments. If my GP thought of sending me for a second opinion earlier, we could have started treatment earlier.

I do not know if this is going to get worse - I'm now at the stage where my hands, arms, face and feet tingle all the time and is numb. I also have a weird "crawling" sensation in my back and sometimes on the skin of my head. I cannot climb stairs, I walk with difficulty and even getting out of the bath is a battle. I have no strength in my legs - if I bend down I can not get back up again as my legs are too weak. I am also on cortisone and get polygam treatments every 5-6 weeks. The cortisone is necessary but the side effects are so horrible - now I have acne, a moon face (my face has swollen up twice it's size), I have gained weight and now I have blurred vision.. I can still work and drive, but everything I do is like huge workout - cleaning the house, shopping - feels like an aerobic workout.

I'm currently receiving polygam infusions every 5-6 weeks (32g) and I take 60mg of cortisone per day. I have now been for 3 polygam treatments - I thought this syndrome will last maybe a few months or even a few weeks, but the more I read about this, the more I realize that this is not the case.. Is there anybody who can relate to this and tell me more or less what path this syndrome takes - I have had many ups and downs but I want to win this fight!

I want to know if there is any vitamins or natural products that CIDP and GB patients can use to help the recovery process - in other words the re-growth of tendons, nerves and myelin. What can help the process along? Someone mentioned to me Vit B and natural products like Barley Green. Can you please help or refer me to someone who will know about this?

This is Sun-Young Jeong. I want to get some help about Guillian-Barre Syndrome (GBS). One of my brother has had GBS since 1994. At that time, he worked at the branch of LG, the 2nd largest electronic company in Korea. At the day when he felt something was wrong with him, he was sitting up all night to work for his company. Next morning he came back his home because he felt it’s very difficult for him to move by his own will. So, he went to a big hospital around his house and he was told that his disease was GBS after two weeks. His condition get better year by year, but the recovering speed was really very slow. Even now he tried to return his original ! condition, but all effort looked like to be useless, but he don’t’ want to give up and don’t want to lose hope.

A few years ago, he applied for workmen’s accident compensation insurance against the company and court because he got GBS when he was working for his company. The answers, however, was not for him. So, he and I tried to collect some cases that GBS patient got some workmen’s compensation insurance from company or government. If you have similar case to my brother, could you give me some information?

I'm a fourth year medical student hoping to do an elective on the research side of GBS. I have first hand experience of GBS as my sister was diagnosed in 1999.
I would be grateful if you could suggest any contacts in order to achieve this.

Thank-you in anticipation
Michaela, UK [case history]
01.2004

I am a patient of Guillain Barre Syndrome since 1990. CAn you help me to get rid of this disease? If yes, I can send each and every detail to you. I am residing in India. I can come over there for treatment, if guranteed.

Pls reply as soon as possible.

Best regards
V. Baweja [case history]
01.2004

Do you have any information on “stiffness” (not pain) of the thigh muscles?
I am really interested in those that have a continuing stiffness in the lower back and upper legs even after 10 months. This is what I have. At 6-8 months I seemed to be improving but in the last month I seem to have got a worsening stiffness that stays with me despite of stretching and resting for several days. It makes my walking, which was not bad. now somewhat jerky with loss of a quick reaction for balance. Any ideas on this one ?

My uncle got gbs about 5 yrs ago he could feed himself he couldn't't do nothing I don't remember how long he was in the hospital for. All I can remember is him telling me how he wanted to die.
After getting plasma treatments he got better. When he got out of the hospital he lived with me and my mother. He couldn't walk he had to learn how to again. Me and my mother took turns durning the night to massage his body because his mussels ached so bad. All he would say was why did this happen to me? He wanted to give up so bad, he didn't want to live anymore. My uncle Erick was 24 yrs old smart, very active, he would rock climb, ride his bike daily. So we didn't understand why this happened to him.
We made it through the hard times he was doing good for about three years. Then he started acting weird. He said it was because he would hypnotized himself and wouln't come out of it. I don't believe that.He's been to the mental hospital two time.
The first time they said he was schizophrenia, so when he got out he was court ordered to take medicine. After awhile he felt fine so he took him shelf off the last medication he was supposed to take. a couple month later he started to act weird again and ended up back at the mental hospital. so now he is on some new medication but he is very slow, he stutters when he talks, everything is blurry, and sometimes he says things that don't make since. The doctors say that it isn't from the gbs, but gbs affects the nervous system and doesn't it go to the brain? Doesn't it start to shut down everything so why would that not affect the brain? So my question is have you or anyone else heard of something like this happening to someone they know?

If you have any question about my uncles health records that might help you out ... please let me know and i'll get them for you. Please let me know if you heard of this from someone else because it is tearing my mother to see her baby brother like this. We don't want him to do something to himself because he is almost to that point again. Also I would like to know if he might get worse. Thank you so much for taking time to read all the e-mails you get.

Tia Westenberger [case history]
Appleton, Wisconsin
01.2004