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.

In 1962 I was diagnosed when I was 12 years old with Guillain-Barre Syndrome. I am a living miracle of this illness!
Back then I can remember the doctor literally telling my parents to just put me in a nursing home facility as I would never walk again. I wore a brace for my back and had to walk with a walker. I even experienced a slight paralyze of my face which has affected my vision in one eye. Reading this information pertaining to the illness has certainly brought back many memories.

I am 55 years old now, have had 3 beautiful, healthy children and a wonderful marriage. I can only thank my parents perserverance, prayers and God for my recovery. Presently I do experience discomfort in my legs and feet in that I cannot stand for long periods of time. I know I cannot ever take a flu shot, but I do wonder if this discomfort has anything to do with this syndrome. However, I am more than happy to report that I am a survivor even though the doctors at the time certainly predicted a different outcome for my future.

Not very many people, even professionals, seem to know much of this syndrome. Is it as rare now as it was back in 1962?

Karen Villien
12.2005

Webmaster: Karen, your story illustrates what giant strides have been made in the treatment of this mysterious syndrome - and how much remains to be discovered. Such as a cure, a treatment of the residual symptoms, prevention, etc. It being a rare disease that most doctors never encounter in their entire career still makes getting a diagnosis and/or proper treatment a problem for some patients.
I don't believe it has gotten less rare than in 1962. Perhaps a number of sufferers were incorrectly diagnosed back then as having polio or similar illness, and with insufficient knowledge, more people died due to insufficient supportive care. GBS is still classified as a rare disease today, and the information available to lay people has increased dramatically in the last 6 years, coincidentally the period in which this website has existed for that purpose.
Do check the PostGBS page to read comments from others who suffered from GBS too, around the same time you did!

My Dad who is a extremely active and very strong 79 year old (his health was more like a 60 year old) was diagnosed with GBS five weeks ago. He complained of terrible pain through his lower back and upper thighs and eventually got so he was unable to walk or stand. His electrolytes were very low as well. He is making progress through physio- therapy. He had numerous Mri's and Catscans ruling out many things before they made this diagnosis.
He is still on long acting morphine for pain as well as anti inflammatory meds. Luckily it has only affected him from the waist down.
My concern is ... is it normal to have this much pain with GBS? Is it normal to have to have this type of pain meds when you have GBS? No one seems to familiar with this in our area so I was thrilled to read the articles.
Also are there in the Hamilton/Niagara region in Ontario Canada that we may contact to learn more about this?

Webmaster: I am very sorry to hear about your fathers illness! In answer to your questions: Pain. Yes, many patients experience extreme pain. Check the 'Damage Caused' and 'Symptoms' pages for the various symptoms and their causes in GB syndrome patients. The larger muscle groups may be affected in those who experience pain, you will find case histories relating to this in the 'Case histories' section. Check Jayne's case history, there are others. As for the pain meds, the doctor will be monitoring his pain levels and prescribing as necessary. The fact that he is on other medication may influence the issue. Please talk to the doctor if this is causing you concern. Finally, you're in luck! There is a support group in Ontario, see 'Support Networks'. All the best to your father and your family.

I would like some advice on GBS. My stepdaughter's mother had GBS as a child and she has informed me that her daughter (my stepdaughter) is never to get the flu shot again in her life. I have read some information on GBS and the flu shot, and find the risks very low for those who have had GBS. My stepdaughter has never had GBS. Is she safe? Can you advise me?

Webmaster: GBS is not hereditary. And GBS can be triggered by a number of factors apart from flu vaccinations. The issue is dealt with in this website - type in 'flu vaccine' in the search field top right and read the links that pop up from within this website, or check the links at the bottom of the recovery page.
In your case, the child in question is not yours, so the best thing is probably for all parties to meet at the mother's doctor's office (or other GBS-competent health professional) and discuss it there with reference to the mother's childhood journal as necessary.

Someone I knew very well unexpectedly commit suicide recently, and the partner now believes the person suffered from GBS. Do you know of any possible link between GBS and suicide/depression?

Webmaster: I have rephrased the question slightly- the writer has asked to be anonymous. A link between GBS and suicide - no. However, patients suffering from a serious disease, or who experience difficulty getting a diagnosis or recovering, may suffer through feelings of frustration, angst, 'why me', and may find it difficult to get back into their old life again if they have residual symptoms or other issues. Check the treatment and recovery pages for more on the psychological implications - hope this helps.

I m Priyanka from Lucknow (INDIA). I have come to know this site from Internet and i would like to share my experiences regarding this topic. My brother who is 20 yrs old is suffering from this disease from last 12yrs. He got his first attack in the year 1993 aug. and he is getting his treatment done form SPGI lucknow.It all started with Diahhoreah with blood and fever and after 2 or 3 days there was acute pain in his lower limbs with sleeplessness. Slowly he got his this , stomach , upper limbs , heart all under its attack. The head portion was remaining unaffected. That time he was admitted in SPGI and was in hospital for around 30 days. HE was also on oxygen for 3days due to breathing problem. That time no drug was being administered to him , only few oils for massage was given .He started recovering from the disease with power coming in his every organ. The only mark left over was of Bilateral Foot drop which is still there.
Sir, we all tried to recover this deadly experience when in the year 1999 he was again affected by this disease with the same symptoms .This time he was administered Predinisole(wyslone) of the dose 30mg which is now being reduced to 5mg which continuing from last 1year.
Again recently again i.e on 22nov 2005 he experienced weakness in his lower and upper limbs.When we took to hospital doc said he is suffering from the complication of the disease.Well that's is all about my case.
I would like suggestions and treatment procedure for it and I would also want to know that will repeated itself again.In my knowledge the disease do not repeated itself , but its been three times since.If required I can send u his case history and prescriptions if required.Do give some advice. hoping for urn reply soon

Webmaster: I am a lay person, so I cannot advise on treatment in this specific case. I have written to Priyanka separately, and advised her to contact the support group in India.

I would like to get some information on doctors that specialized in GBS syndrome in the South of Florida.
Thank you.
Mariela Nordlie
12.2005

Webmaster: Please check 'Support Networks' in the menu to the left, there is a support group in the US that can help you.

Dear Sir/ Madam,
I am a victim of GBS in 1978,resulted in muscular defects in legs below knee.
I can walk, I can run but there is a bilateral foot drops( some extent). Can it be recovered. Some doctors saying that it is 100 % recoverable but treatment is costly. Shall I believe on them. what treatment should I pref ere and its availability in India can you specify please.
My year of birth is 1971.
I am desperately waiting for your reply.

Shrihari Deshpande ( Male)
India, 11.2005

Webmaster: Footdrop is, I believe, not 100% curable, however you may find that ankle-foot supports helps relieve the foot drop to some extent. Please contact the support group in India (see 'Support Networks') for information on somebody who can advise you on this in your area.

Had a bad case of GBS in 1984.Was wondering if anyone out there is now suffering (like I am) from Psoriatic Arthritis.

Great site and good luck and god speed to any and all who suffer with the horror that is GBS.

Michael Eden
11.2005

Webmaster: Michael, I've never heard of any patient suffering from the combo - closest I've come is Gabriele's father, see her letter a bit further down on this page. Arthritis is an autoimmune disorder as is GBS, it is not uncommon for patients with autoimmune disorders to suffer from more than one, simultaneously or at varying periods of their lives.

What is the concensus on having a flu shot. I had G-B two years ago and I made a full recovery. Am worried now about the coming flu season and whether I should get a flu shot. I am a healthy 71 year old woman.

Webmaster: Please check the "Recovery" page for information on this issue. There are also links at the bottom of this page that will be of help. Finally, try typing in flu or influenza into the search box at the right hand side of each page. Hope this helps!

I was diagnosed with gbs approximately 3 years ago. I still suffer some residual paralysis and lack of planter reflexes. Also, when I become ill, it seems every area that was impacted by the gbs becomes numb again, loss of sensation. This includes my diaphram.

I was wondering if you could tell me of a site, or just tell me, if alcohol consumption (I was drinking 3-4 beers a night) has anything to do with GBS. The sudden paralysis I experienced tells me that my paralysis and lack of sensation were not caused by alcohol consumption. It seemed to happen in a matter of a few days.

The main reason I'm asking is because I'm having to appeal my disability claim for the third time, and I feel, my attorney feels, even the review board for the disability case feels the judge was in gross negligence with my case, and I feel that if I can find some documentation stating that the small amount of alcohol I was consuming had nothing to do with the gbs, it would make all the difference.

Webmaster: Kristen, I have never come across any information linking GBS with alcohol. Helpful comments from readers would be appreciated!

My father is slowly but steadily recovering from GBS. We have been lucky, he was not hit by the very severe form of the illness. The "pins and needles" are still driving him crazy sometimes, the recovery is not quick enough for his taste, and he takes it as a personal offense to be exhausted after a longish walk, but these are the rather small inconveniences which can be mastered with a little patience. (But do you know many men who are patient...???) He can even drive his car again, and I had no idea of just how important this was for his independence. (We don't have a car in Paris, and we never miss it.)

The autoimmune hemolytic anemia is still making trouble. As soon as the doctors lower the cortisone level, the HB-value drops rapidly. I passed all your information and links, etc. over to them, but they can't find anything to help or to explain. The oncologist thinks that there might be some ultra-rare cancer involved, but there is nothing concrete, and I hope that there will never be. Let's hope that things will fall gently into place after a while.

Dear Sharon, we have been so lucky to find your website. It has given so much information and support to the whole family. Uncertainty is so difficult to endure, and my father was really relieved when I translated all that information for him and when he realised that his illness was actually following a pattern. Thank you so much !!!

Webmaster: Thank you for keeping us oriented Gabriele, and all the best to your father and your family!
Helping patients understand that this dreadful syndrome actually does have a pattern, and that recovery IS part of the pattern, thus bringing reassurance, is my mission and the goal of this website.

[continuation of a previous post in January 2005].
For the time being, the GBS part of the illness is progressing quite well, but the autoimmune hemolytic anemia is the frightening part.

I wish you all the best, and happiness and good health for you and those whom you love. You must have come through very difficult times with somebody dear to you.

With warm personal regards

Webmaster: Thank you Gabriele, we have our fingers crossed for your father and your family ... see a later update above.

Hi all,
Had a bad case of GBS in 1984. Was wondering if anyone out there is now suffering (like I am) from Psoriatic Arthritis.
Great site and good luck and god speed to any and all who suffer with the horror that is GBS.

Webmaster: It is apparently not unusual for people with autoimmune conditions to suffer from more than one of these simultaneously or at varying periods - rheumatism is also an autoimmune condition, and so are lupus and MS (multiple sclerosis) among others. I have never heard of a GBS-recoveree suffering from psoriatic arthritis before - readers, please email if you can help!
Also, you may find this link useful as it could point you towards more relevant litterature.
Finally, please consider sharing your case history, patients with multiple autoimmune conditions need all the inspiration and help they can get! See the readers comment above this one..

In 1993 my wife had G.B.S. from which she made a remarkable recovery. She is now 70 years old and has been offered the Pneumonia injection. We queried this with our GP because she had had GBS and were told that there was a slight risk. Pneumonia being a greater risk.

She went for the injection this morning, but because we are due to go on holiday the injection wasn't given. This has made me pause for a while and wonder whether or not we made the right descision to have the injection in the first place.

Please could you offer any advise as we can always cancell having the injection, as I would hate it if this triggered off another bout of GBS.

Webmaster: Dear Mr. Coley, I understand your predicament. In your situation, perhaps the best thing to do would be to discuss your worries with the neurologist who diagnosed your wife, as he/she is in possession of the facts of her case, as well as of the latest research into the subject, and can best advise you on what to do. I wonder if you have seen the page on vaccinations at this website? All the best!

My name is carmen and I am a 63 year old latinamerican woman who speak spanish and a little english, but I will like to share my GBS syndrome that occurs to me almost 10 months ago in spanish.

Después de pasar por un fuerte dolor de garganta por dos días y de un flu intestinal por cinco dias que algunas veces me produjeron fuertes dolores estomácales. Seguí sintiéndome débil continuamente y al caminar notaba que no era de mi forma habitual, tanto que al mirarme en el espejo de cuerpo entero reflejaba mis piernas un poco rígidas cosa que no le dí mucha importancia pero seguia con el malestar.

Fui a donde un laringolo y este me diagnosticó debilidad por el flu y me receto unos anti inflamatorios. Me mantuve en cama dos días con mucho molestia y debilidad en mis piernas . Dos días despues llevé a mi esposo al aeropuerto pero le comentába que yo me sentía muy mal porque mis piernas cada dia se me debilitan más.

Cuando mi esposo salió del carro y yo tomé el lado del timón me desplome sin ningún dolor pero me paralize. Me incorpore como pude, y cuando me senté al timón pude notar que podía mover mi pie derecho y dentro del carro maneje paralizada lentamente y me comunique con una amiga doctora que me recomendó que inmediatamente consultara a un neurólogo .

Tuve la suerte que en urgencia fui diagnosticada inmediantamente por la doctora de turno como Guillian Barre syndrome, enfermedad que nunca yo habia oido.

Estuve hospitalizada 9 días con intensos dolores que me duraron otros 15 días mas. Mi paralisis llego hasta las caderas y fui parcialmente afectada en los brazos, estuve inhabilitada por tres meses. Mi tratamiento fue gamaglobulina por 5 horas durante 9 días.

Mi recuperación ha sido bastante rápida . Estuve en terapia por tres meses. Actualmente no padezco de dolores y solo el dedo gordo de mi pie izquierdo ha sido afectado levemente lo cual me produce un leve desbalance al caminar.

En mi país es muy poco lo que se conoce sobre este syndrome que es desvantador sino se tiene atención inmediata.

Me dió mucho gusto leer ampliamente sobre todo lo relacionado con GBS porque siempre queda la interrogante de que serán las secuelas que deja esta enfermedad.

Webmaster: Carmen, muchos gracias for writing in, I am very sure that your story will be of inspiration to other latinamerican patients. Good health!

My name is Jane Baker and I wrote to you quite a long time ago I think over a year ago about my brother Chris who has GBS. He is the one with a very severe case and I had asked you about if you had information on real severe cases. He was totally paralyzed and could not even open his eyes in the beginning. I did want to let you know that he is still improving yet it is so very slow. After at least 1 ½ years or more he was finally able to get off the ventilator. He did go back on for a few short times when he got sick. It has been more than 2 ½ years since he became sick and he can talk, eat, work his wheelchair with his head, move his arms, (from his shoulders, yet not much in his fingers and hands) so he is progressing very slowly. I do hope that it continues for him.
I just wanted to try to give you at least a quick update on his extreme case.

Webmaster: Readers, please use the search box at the top right and type in the word Baker to see Janes email of 12.2003.
Jane, it is just great to hear that your brother is recovering so well. I am so very glad to hear this - please do assure him that our prayers and thoughts are with him on his slow road to recovery. Some recoverees feel that GBS = Getting Better Slowly.. All the best to Chris and your family, and do keep us posted on his progress!

My wife had a miraculous escape from GBS in February 2002. Her life was saved with timely intervention of medical help like IVIG. She was out of danger in a week's time. However, because of some of the steroids used to regain the low platelets count level, she has put in an additional 10 kg of weight, which she has cut down in the last one year.

She lead a normal life with stress and strain like any other normal person. We had a 2-year old baby at the time of her GBS attack. Now we plan to go for a second child. Can we be advised on the medical complications on going for a pregnancy, or should she has to completely avoid a pregnancy? She had an ectopic pregnancy a few weeks before the GBS attack and undergone a surgery to remove a tube. She has to get pregnant with the remaining fallopian tube. Thanks in advance for your valuable advice.

Shahul
10.2005

Webmaster: Shahul, there is very little information available on GBS and pregnancy. I have a couple of real-life case histories on this website. However, it would be best to consult your wife's neuro on this issue, and he/she is in possession of the crucial facts of her case history and can best advise you how to go about this.

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My name is Ray, I'm 70 years old. I was diagnosed with GBS in 2001. I spent 4 months in the hospital and in rehap. I was wheel chair bound for six months and six more months using a walker. But now I only use a cane. With the help of all my family members , especially my wife, and friends and good nurses and therapists I was able to survive this dreadful disease. There is hope! I was 100% paralyzed but with hope and prayer I'm about 90% well.

Ray
10.2003 [case history]

Webmaster: Ray, thank you for writing in to inspire others with your recovery! All the best with the final 10% recovery - our prayers and hopes are with you.

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This was regarding my Masi, nearly two month earlier she was suffering from Jaundice which has end up with GB Syndrome. We have consulted Neurologist and subsiquently she was hospitalised also but from last three to four weeks she is in ICU and on Ventelators for last 2 weeks. I want to know how long she will be there and will she be alright. If yes how much time it will tak her to recover fully as we all are very panic by her present condition. If you can soon reply for this.

Thanks
Kanchan, India
10.2005 [case history]

Webmaster: Being hospitalised and on a ventilator basically means that the doctors are keeping a very close eye on your Masi. Please try and see this as a positive sign.
Please check the pages about 'Phases of GBS' and 'Treatment' for information on how the syndrome generally progresses, and what the doctors are doing for her. There is also a lot of information about what you and your family can do to help.

I need your help!! .... GBS reoccurance after 2 years.
In my next message I will provide you with the the results from the lab testing that is usually carried out for GBS diagnosis. Thanks!

Webmaster: ... I am not qualified to offer specific information, please contact your doctor or specialist who knows your case history and can offer you treatment.

I am a Neurologist in Sri lanka, involved in research into GBS.
I would be grateful if you would kindly grant permission to use some of the case histories in your website to illustate a lecture.
with best regards,
Dr UKR
Sri Lanka, 09.2005

Webmaster: I would be honoured to help your research into GBS in any way that I can. Please provide a link to the website so that your listeners can refer to it in the future.

my name is Fola Oni and i am 36yrs old,i had GBS when i was 25yrs old and ever since then i have continue to improve from time to time.Sometime i get up in the morning able to do something new and other times my nerves pull my fingers in the other direction.
My case was seem to be very srange to my doctors because as bad as it was,i did not use any breathing aid and my sensation remaind 100%.
I am however using a powered wheelchair and would sure want to get back on my legs someday.
I will therefore want to be a part of your research if it is ok by you.I am willing to comply and go all the way.
Please kindly send me a reply leting me know what you think.Thank you and hope to hear from you soon.

Webmaster: Fola, you are among the few who realise that the way to a cure and improved understanding of GBS is through research and trials. I am afraid I do not undertake research myself, but if you would like to send in your case history and mention that you would like to participate in a trial, you may be contacted by a researcher looking for suitable patients. Please check the research page for information on upcoming trials that your doctor can sign you up for - researchers, please write in about upcoming trials!

She lead a normal life with stress and strain like any other normal person. We had a 2-year old baby at the time of her GBS attack. Now we plan to go for a second child. Can we be advised on the medical complications on going for a pregnancy, or should she has to completely avoid a pregnancy? She had an ectopic pregnancy a few weeks before the GBS attack and undergone a surgery to remove a tube. She has to get pregnant with the remaining fallopian tube.

Webmaster: Mr. Shahul, please contact your doctor or your wife's neurologist on the issue, they will be able to advise you on the basis of your wife's case history, which they will have available. The case history database has several stories of pregnant women with GBS, none of them have reported ill-effects in their children.

HI MY NAME IS LUPE AND I HAD GBS ABOUT 2 YEARS AGO AND I WANT TO KNOW ABOUT FLARE UPS PLEASE WRITE BACK ANYONE

Webmaster: About flare-ups - have you checked the 'Recovery' page of my website for the section on relapses? They are not very common, but do occur. If you suspect that you are going through a relapse, you need to see your neurologist as soon as possible..

My 13year old son came down with GBS on June 13, 2005. It progressed at an alarming rate. Within a matter of hours my healthy 13 year old son went from playing with his younger brothers- running and jumping-to barely being able to move any part of his body. He just woke up one morning and couldn't stand. I thought he was pulling a prank until I saw the look in his eyes.

His father and I took him to the emergency room immediately. After 8 hours of tests the doctors made their diagnosis of GBS. They told us about possible treatments and what the side effects would be. We agreed with his doctors to try the most evasive treatment first. So we agreed to the IVIG for 5 days of treatment.
He didn't respond immediately to the IVIG. He experienced chest pains and severe headaches from the treatment. We worried about heart attacks and strokes. Luckily, they were only anxiety attacks. After the second treatment he finally began to show improvement. By the 5th day and 5th treatment he was able to lift his arms and move his legs again.

He spent 3 weeks in full time physical and occupational therapy. He had two sessions a day of each physical and occupational therapy for six days a week. He was released from full time physical and occupational therapy on July 13, 2005 (one month later).

He is back to playing and picking on his younger brothers. He is working daily on getting back the full fluidity that he lost in his motor functions. He still goes to physical therapy, but it is only two days a week now. He is walking without any assistance of a walker or cane. According to my son, the thing that he appreciates the most, is being able to visit the restroom without any assistance (he's really shy). He still gets easily tired but the doctors said that it was to be expected. He's not quite up to running yet, but his spirits are high and we see improvements daily. Everyone is optimistic and he is bound and determined to have a full recovery.
I pray for all who have had this syndrome and who have loved ones with this. Until my son contracted GBS, I never heard of it before. But you learn quickly about something that may alter the life of your child forever.

Webmaster: Acute GBS is scary. GBS can affect the body unpredictably, which is why one should consult a doctor immediately, just as you did. How wonderful that the doctors diagnosed it so fast, and that the IVIG worked so well in your sons case! I do hope he recovers completely, best wishes to your family and thank you for writing in with this miraculous story!

... I didn't know the syndrome has different categories - which you identified with letters - cidp? This syndrome is very frightening to patients and families - I am interested in more info. Thanks in advance for any help.

Webmaster: Please check the variants at this page. You must have entered the website through one of the print pages, more information can be found at www.jsmarcussen.com/gbs

My father developed double vision couple of days back and over the next few days he has lost strenght in his legs and hands and is even unable to sit. what is the best course of action. What should be done immediately to arrest further affects??

What is the difference of symptoms between GB Syndrome and ADEM?
What is the best treatment to stop the effect?
Thanks

Vivek Deorah, Dibrugarh India
07.2005

Webmaster: To the best of my knowledge (I am not a health professional) ADEM and MS are both demyelinating diseases of the central nervous system, while GBS is a demyelinating disease of the peripheral nerves. Try googling for ADEM information.

My Mom is recovering from severe GBS. She is 81, extremely independent and may have contracted the virus while on a Caribbean cruise in January '05. She received a course of IVIG which saved her life and though completely paralyzed has managed to survive several major complications. There are many facets to this illness that most medical professionals are unfamiliar with and has slowed her recovery. Specific areas of concern for her include neuropathic pain relief, bowel and bladder issues and secondary effects on Diabetes and blood sugar regulation. Thanks for any assistance you can offer us.

Webmaster: I have referred Dr. Richter to GBS Foundation International for more information as well as a local support group.

I was diagnosed with GBS four weeks ago and have been home from the hospital for three weeks now. I am fortunate to be regaining my strength. I am able to twitch the left side of my mouth, but other than that, my face is pretty much paralyzed. My speech pathologist has been doing some sort of electro-something in hopes to stimulate the facial nerves.
Has anyone had any success with accupunture and recovering from GBS? Just a thought. Also, I have a lot of tingling sensation in my hands and feet. I am hoping this lessens as time goes on.
Thanks,
Heather

Webmaster: The 'Focus on Post-GBS residuals' page offers information on tingling and how other patients have experienced or dealt with it. As for the acupuncture and facial treatment, readers with experience please email in!

My daughter had GBS (twice) at the age of 3. She now has Chronic Fatique Syndrom and Fibromyalgia. Do many people get these following GBS?

Webmaster: I can't say that I have heard of this - readers, please email if you have information to share on the issue.

Thank you for the website info on GBS. I had a severe cold in November 2004 which seem to linger into January 2005.

For two weeks beginning 2/1/2005, I had curious symptoms of my feet feeling like they weighed 100lbs. The feet would tingle and hurt to walk on. Then both hands began tingling. I had so much pain in legs and arms on 2/14/2005, that my family had an ambulance take me to a local hospital. I was discharged after 3 hours with a diagnosis of anxiety. Four days later my face was tingling, my word were slurring and I was drooling from the left side of my mouth. I was again taken to the ER via ambulance only to be diagnosed as URI and given Z-Pack. Two days later, I could not walk, talk or even use my hands with such a debilitating weakness.

This time my family requested that I be taken via ambulance to a different local hospital. I was admitted with arrhythmia's and a full study of having a CVA. My family was devastated. I am a 54 health professional. No matter what I said to the Neurologist and family physician, they claimed that I just had a neuropathy from being a diabetic. They sent in a psychiatrist to see if I was depressed and anxiety has caused my weakness.

My family insisted that I be sent to a local rehabilitation center to recuperate.
I was at 2 rehab centers for a period of 15 weeks, with only recently told I had the diagnoses of GBS.

I have spent many hours with Physiotherapy, Occupation, Speech, Hand, and Psycho therapy. For one month, I could only walk 50 feet and my feet hit the floor so hard with each step. The therapist told me that my brain is not recognizing my hands or my feet. I had to eat with a specially designed spoon, and becareful of not choking.

I now can only walk 210 feet with a walker, and have decreased muscle activity in all limbs. The amount of medications I am on will astound a person. If only I was diagnosed with GBS and received the correct medication, I know that my recovery would progress faster. I have never felt so incapacitated and upset over the doctors misdiagnosing GBS.

My only wish now is to alert the public on GBS and bring further awareness to our community.

Webmaster: The frustration and pain of a delayed diagnosis or misdiagnosis cannot be measured or easily described. Please share your stories - they will appear on a dedicated page focusing on this issue in relation to Guillain-Barré syndrome.

My name is kinan babar .I am 18 years old and live in Islamabad Pakistan. i am a student . First i would like to thank you for making such an informative and easy to understand website about this desiese.
A month ago i had this (GBS) attack and with in a week my leggs got paralised . I could not climb up stairs and later on couldnt even get up from my bed in the morning! i went to a medical clinic but they could not figure out what was wrong infact they said it was a dehydration attack because of lack of water and hot climate. then they injected a bottle of gulucose and said i should drink lots of water with salts .... later i went home , draging my leggs to the bed and prayed for recovery ... by that time my dad had returned from a trip to a distant city . he was horrified to see my condition and took me too a neuro surgeon .By that time i was on a wheel chair my hands and finger tips felt numb and it was difficult holding cups . i had trouble swalloing it felt as if there was some thing stuck.

the neurologist diagnised this in time and said 3 things:
1 this is very serious
2 we have less time
3 the medicine(heumoglobilene) is expensive
but at that time money was of no importance . They shifted me to the ICU(intensive care unit) after a nerver test and started the vacination. i stayed in the hospital for a week. they took good care :) . and now its been a month and can get up using my standing frame . oh and i forgot to mention the pain i had. it was a sevear headace the back part of the brain, medula i think..but that was over within 2 weeks...but the weird fact is that my hands havent recovered ...they r still numb and its very difficult typing. i cant diffrenciate objects by touching them like paper and cloth. i am glad that this nightmare is over ...if there is anything you would like to know about this experiance please ask me ... i thankyou again for making such a great website

Kinan, Pakistan [case history]
05.2005

Webmaster: Kinan, you seem to have had a close shave there! Check out the 'Focus on Post-GBS residuals' page for more on your finger problems. I am very glad my website was of help. Good luck and speedy recovery!

My partner had GBS about 4 years ago this was before i meet him, he has since fully recovered. We have a healthy 4½ month old son. I would just like to know if this condition is herediatry. And also are there any ongoing effects from this illness.

God Bless
Lisa, Australia [case history]
04.2005

Webmaster: Lisa, GBS is not hereditary. There may be residual symptoms after the syndrome, read more about these under 'Recovery' and 'Focus on Post-GBS residuals'.

My dad was diagnosed almost 25 days ago with GBS. He has since been placed on a ventilator, suffered from enlarged gallbladder and liver, and then went into kidney failure. He was previously a VERY healthy 61 year old man, who is now sedated, with a feeding tube in his belly, and a traecheostomy to allow him to breathe.

Can you please advice if others have suffered as much and if so, there outcome from GBS and all of its complications? I have read the entire website, and I love it and live by it, but I haven't seen many cases with as many complications except for one, and I would like to maybe find out what we are up against and facing in the future.

Many thanks for any info you might be able to supply.
Kara [case history]
04.2005

Webmaster: Kara, let me know where you are located and I will find a local support group for your family. Readers, please share your case histories! As you can see, they are vital in keeping patients and their families hopeful.

My mother Beatriz who was to celebrate her 50 years of marriage she died march 21 2005. she had fell about a year ago it was right after that her left hand she started losing feeling in her left hand also it started going numb she really got depress. her doctor sent her to diffrent doctor ..finally they had a diagnosis GBS.
my dad took her to the hospital emergency because of her breathing. we ask her doctor to give her a oxygen tank he said that her lungs were okay that he wanted her to not be depented on the tank.

my dad kept taking her to the emergency room. he aged a lot. her lower back started to hurt constant pain. her other right hand would shake it started going weak. I felt so helpless. then finally her legs she could hardly stand. she would try to eat but spit it out. she didnot want to be left alone we gave her a emergency ringer all she had to do was push it and it would go off loud. one thing i now recall her saying was her stomach would jump then her breathing would become short and erratic. towards the end she started seeing and saying her dad was comming to see her. hes been dead for yrs we knew then that her time was near she was not getting oxigent to her brain.

she died in her room monday morning in her own bed. she was a great mother and I will miss her for ever.

SAD IN PERRIS.......
04.2005

My dear

although I do not know you i would like you to know that your site has brought comfort to me because finally i could read all about what was happening to me.

All the other tests i underwent, including an MRI gave a clear picture of health and in the meantime my symptoms were worsening and i was panicking because no one told me what could have been going wrong with me.

I was especially upset at spending the equivalent of $1,200 on a neurosurgeon's fees alone (MRI and 40 minutes consultation only!!!) and all he did was SUGGEST I visit a neurologist and never ever did he mention the word peripheral neuropathy or GBS!!! My GBS is mild, (immense stiffness from the waist down and severe walking difficulties because my feet were numb) but i went through an agony of tests with doctors not diagnosing GBS until i suddenly remembered something i had read and did so myself from all i learnt when i used to work as a voluntary nurses' aid.

The neurologist i was sent to then confirmed my diagnosis and sent me for gamma globulin iv for 5 days. I have to call him next week and I will suggest I visit a physiotherapist to help me with my stiffness because just this morning i bent down and felt a pain in my lower back and could not walk for a short while because of the pain. I also suffer from an arthritic hip so i took my pain killers and now i am slightly better but will spend the rest of the day taking it very easy.

God bless you for your website!

regards
Josette, malta [case history]
03.2005

My name is Karen Dahl, I had GBS in early 1980. I had a severe case although the progression stopped just before Life support measures were taken. I was pretty much paralized and spent 7 weeks in the hospital.
In finding your web site today. It brings questions to mind that some symptoms that I have might be related to post GBS.

I have felt pretty blessed as I have carried on a pretty normal life style. Pretty active in sports and I work a full time job that is pretty demanding physically and mentally. I love to hike, ski, walk, and such. I have not considered having many after effects of this disease. I do recognise that when I get stressed or overly tired my feet fell numb, tingle and sore. That has always been a signal to me to slow life down a bit. In reading others experiences I have had similar experiences but, never really considered that it may be residual from this disease. I appreciate the info.

My sister in law was attached by this horrible “disease” about 10 years ago. She received about 90% from this illness. Today I was researching for information on GBS because I own and operate a Durable Medical Equipment company and my brother called me to ask me for one of my Stimulator Unit for my sister in law. Apparently she still suffers with muscle atrophy and muscle pain. She is a good example of recovery. She had a lot of determination and will. She was in the hospital approximately seven months and in rehab for about 1 year.

I just want to share with you that we are a big family and some of us are real prayer warriors.

I will keep all of you in my prayers and pass it on to my church and family. Please do not give up your “faith”. God is awesome and he is in control. My heart aches reading about all the different cases on this horrible illness.

Help! My mother was just diagnosed with GBS a week ago. She is experiencing such horribly, painful... untolerable back pain....I have not read of much in this arena as having back pain affiliated with this syndrome. Does anyone have any insight for us, or experienced such excrutiating back pain as related to Guillian-Barre'???? The doctors are not very helpful, and we are so frustrated.

Thank you for any input you may have.

Jan Bierbaum [case history]
San Clemente, California
02.2005

Webmaster: Back pain is one of the symptoms of Guillain-Barré, see 'Symptoms' > 'Sensory nerves may be damaged'. There are real-life case histories here that include back pain as a symptom, see 'Case histories'. Relevant stories include those of Lyndsi Graf and Peter Nørlund, etc.

Hi, my name is Ivan and i am from Mexico. I had the syndrome when i was 8 or 9 years old and I fully recovered, i think. Sometimes i get these strange pains in my legs that I control with aspirin, but i need to know if its a scar left by this syndrome. If you can contact me with some answers at this email it would be very appreciated.

Thank You
Ivan Martinez [case history]
Mexico, 02.2005

Webmaster: Your symptoms are among those experienced by a number of patients following recovery. Check out 'Focus on Post-GBS residuals'.

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My name is Charles A. O'mara. I was diagnosed with GBS on 7-29-2004, At first I was told I had Bells Palsy, but later found out that was the start of GBS. I was in the Hospital for 5 days recieving Gamma Gloublin treatments. After 5 day's I was sent home.GBS was very hard to diagnose. At first the Doctor's at Saginaw St. Mary's where I was transferred to did not think I enev had it. Although I think by then it may have been in recession.

It has been a long haul. I am slowly getting better. I have been going to physical therapy for 6 month's. Also I have been going to a Chirapractor since late October. She does what is called Bio-Cranial Therapy on me. I felt a difference right away. I have not told my regular Doctor's about this. But it has really helped. I can now walk quite a bit without my cane. Went to the mall today and walked quite a bit. I have talked with 4 or 5 people who have had this and all tell a different story about thier recovery. My feet sometimes feel like someone is poking them with a live wire,as the nerves regenerate. It is painful but not as bad as the original pain I had with this. That pain I would not wish on anyone. Oh! Forgot I am 62 yrs. old. This came like a bolt out of the blue. Hope to hear back from you, with other stories of recovery.

Charles A. O'Mara [case history]
02.2005

Webmaster: Hang in there, Charles, your recovery is progressing slowly but in the right direction. Have you talked to your doctor about the foot pain? Other GBS recoverees complain about it too, see 'Focus on post-GBS Residuals'. There is a collection of case histories here, including one on simultaneous Bells Palsy and GBS - se 'Case histories'.

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My sister has just been diagnosed with GBS. She has been feeling fatigue and weakness for the last week. She has a duck-like gait and continues to feel tingling in her feet and legs. Other than that, she can still walk around. It sounds mild to me. Currently she is undergoing Plasma Exchange. I just want to know:

a) How I can make sure the diagnosis is correct
b) What degree of damage has already been done
c) What degree of damage may or may not be ahead
d) How and when will she make a FULL recovery

I am very concerned and wish to consult a neurology expert. Is there anyone you can recommend?

Best Wishes,
Saara Salim [case history]
Pakistan, 02.2005

Webmaster: Please contact the support group in India (see 'Support network'), who may be able to direct you to a group in Pakistan - they will advise you on how to find a neurologist in your area.

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Your website has been a great help to our family already, and to start with, I should like to say a hearty THANK YOU !

May I ask if you could help with some more information ? I have tried many of the links to American research institutions, but they mainly propose to send information, not to answer questions. I also sent a message to the support groups quoted on your website. Please, excuse me if yours is not the proper address to write to, but I am sure you will understand that we want to leave nothing unattempted.

My father was in New Zealand and Australia (round trip, including Great Barrier Reef) in November, when the first symptoms started : pins and needles in his hands and feet. About one week after his return trip to Germany, at the end of that month, he suffered from excrutiating pain in his back, then his legs became too weak to walk without help, and the right part of his face started drooping.

He was then immediately hospitalized in Germany at the beginning of December, and about 10 days later, all other hypotheses being apparently outruled, the doctors decided that it must be GBS. About two weeks ago, he started rehabilitation in a specialised hospital.

Last Thursday (Jan. 6th), his hemoglobine ratio suddenly dropped to a third of the normal value, and an autoimmune hemolytic anemia was diagnosed. The German doctors have never heard about such a symptom in relation with GBS. The French doctors in Paris (where I live) and whom I interviewed, neither. And they all seem to be quite upset that both conditions are occurring together.
The doctors are wondering if there may be a special virus my father might have "imported" or if there is a special form of this illness known in some other part of the world. Some of them think that the GBS diagnosis might be wrong alltogether, others believe that my father is suffering from two different severe illnesses.
Did you ever hear or read about GBS in conjunctin with autoimmune hemolytic anemia?

Maybe I should add that my father is 74. He was in excellent health before all this started. He had suffered from pneumonia in 2003 and was vaccinated against influenza in October 2004.

Please, forgive me for bothering you with all this, but we are very unhappy and frightened as well, of course. And my father is suffering from a bad depression, as nobody seems to be able to tell him what is going on.
If you have any ideas or links or advice, we should be extremely grateful.

I shall be glad to make a donation for your exceptional work as soon as my head gets a little clearer. With many thanks and best wishes for a happy and healthy New Year,

Sincerely yours
Gabriele Wennemer [case history]
France, 01.2005

Webmaster: I sent an urgent request for help to several support groups - as usual the NZ group was extremely quick and helpful, and sent me the following reply from Kiwi neurologist Dr. Gareth Parry whose articles are featured at this website:
"... I am sorry to say that I also have never heard of this particular combination. It sounds quite unusual. HOWEVER, some people HAVE developed hemolytic anemia after being treated with IVIG for a long period of time (more than one year). This would be more common in CIDP patients than GBS patients, since GBS patients are normally only treated for a month or so with IVIG. See 'Hemolytic anemia associated with intravenous immunoglobulin'. In these cases, ending the IVIG treatment seems to have resolved the problem...".
Gabriele passed this information along to the doctors along with Dr. Parry's offer to be of assistance. Your fathers doctors are working hard to improve his health. Trust them and work with them to maintain a positive outlook in yourselves, and more importantly, in your father. Recovery occurs spontaneously, and a positive attitude may help this occur faster.
Gabriele later reported that her father is much better - see the readers comment in october/november 2005.

I need some information about reoccurrence of GBS; my mom had been attacked by that virus of GBS on August, now she is recovering well. But I want to ask a question that what are the chances of that reoccurrence of GBS, especially if we are going in a cold climate.