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.

My sister was diagnos with Guillain Berre syndrome.She did not have any pain,but after the treatment in hospital she got a little well so the doctor send her home,but than she complain about pain in her arms,hands and legs.We just like to know is this of the muscles getting well and is the pain normal after someone did not have pain in the first place of this syndrome.

Thanks for helping.
Charlene Ferris
02.2006

Webmaster: I would recommend seeing the neurologist - the pain could be from recovering nerves, from under/over-used muscles, or from other conditions that require a thorough check-up. Having GBS does not mean you cannot contract another illness too, its like saying that if you have a broken leg you cannot get a cold at the same time. Be safe - mention this to her doctor and neurologist ASAP. It could be nothing, but if it is something then you want her to be treated quickly, right?

Further down on this page, a dental hygienist asks for information about any known relationships between peridontal health and GBS. I found this little readers comments on a dental issue and decided to include it here:

In "Reaching Out" winter 2005, the journal of the UK support group, a reader called Susanna asks: "My husband is recovering from what was, fortunately, a very mild case of GBS. Last week he had a terrible toothache and after two days the tooth was extracted. ... I wonder if there is any evidence that a tooth infection could cause a recurence of GBS?..."
The response was: "No, tooth infection doesn't cause a recurrence of GBS..".

I read the article on your website about GBS. And after reading your article I am assured that my Dad is going to recover.

I would first like to thank you for excellent information on your website. I am from Bangalore, India and my Dad is suffering from GBS. He is in a place called “Pune”. But what bothers me most is that not only is he suffering from GBS but he also is suffering from renal failure. Will this make his recovery from GBS all the more slower?

I was greatly amused to read about this disease and now am confident that my Dad will recover although it will take time. What my mother worries about is how to get him to the hospital for dialysis once he is discharged since he is not able to move. He cannot move his body from the waist below but can surely sense. Like it is mentioned on the website his feet does pain and whenever we lift his legs and keep them back on the bed he feels better.

It is very nice to know that such websites give you so much of hope and information. The doctors here were very proactive in finding the GB Syndrome in my Dad and physiotherapy has already started. Also he has been given the treatment of Plasmapheresis (PE). But in the fast few days my Dad is finding it difficult to talk. He gets tired while speaking and right now not on ventilators. But is this the indication that he will require one in future?

Well all we can do is have patience and hope for the best.
Thanks for such a great article.

Webmaster: Meghana, thank you for writing in, I am very glad to have been able to help through the website. If you check the Support Networks page (see menu, left) there is a contact address in India that you can use to get further information and support. I wish you and your family strength and a speedy recovery to your father.

My sister have guillain barre syndrome i like to know what kind of food must she eat.

Webmaster: There are no definite do's and dont's although certain foods might be easier to swallow if your sister is having problems with that. Check the Treatment page for more info and suggestions.

it as been 3 months since my grandson was first diagnosed with gbs since then we have been told 3 other things but after each they go back to gbs he his still on itu and has small problems but then pulls through them i thought i would have seen some kind of improvement by now been told worse case theve ever seen but this dosent help to much has any body or does any body no what is the longest period for lying paralized and what is the worst out come of this he his 4 years 5 months old

Webmaster: Children generally pull through much faster and much better than adults do. However I cannot say what should be happening in your grandson's case, you really need to ask the doctors about this. There are so many factors that it is difficult to say what the outcome may be.

Webmaster: The nerve damage is usually repairable but nerves grow very very slowly, as described on the Recovery page. Ex-patients have noticed improvements upto several years after experiencing GBS. Check out the case histories, there are several accounts of this. Good luck and good health.

WE NEED A SUGGESTION FOR SOLVING THE LONG LASTING NOUSEA AND ALSO A MEDICAMENT FOR PSYHOLOGICAL RELAX .... CAN YOU PLEASE ADVICE US WHAT FURTHER STEPS WE COULD DO IF WE SEND YOU ALL THE RESULTS THAT WE MADE UNTILL NOW ??

THREFORE WE WILL NEED YOUR FAX NUMBER , SO THAT WE CAN SEND THE DIAGNOSIS AND THE REST OF THE DOCUMENTS .

THANKING IN ADVANCE
S. MARTINOVICH
02.2006

Webmaster: I'm afraid I cannot help you with your request, you will have to consult your neurologist for these issues. I am not a medical professional, I am a layperson providing non-specific information to patients and health personnel. Good luck and get well soon!

My name is Patrick, I’m 24 and I live in Poland. I got Guillain-Barre in 2002 . I have a large and deep tracheostomy scar on my neck and now I’d like to undergo a cosmetic operation to get the scar off. The only problem is vaccination against jaundice before the operation. What should I do? To take the risk and to vaccinate or… to take the risk and not to vaccinate and to undergo the operation without the vaccination anyway? Or maybe there are no contraindications to vaccinate?

Webmaster: Hello Patrick, I'm afraid you're going to have to speak to your neurologist about the issue of vaccination and the cosmetic surgery. He/she will be in possession of the facts of your case, which are required in order to be able to advise. Good luck!

I developed GBS in 1997/1998 and spent an extended period of time in hospital, also needed respriatory support via tracheostomy. I was 28 at the time and could not have survived without the wondeful help from my neurologist,nurses, family and friends. Fortunately, I recovered over the period of about a year and was able to slowly re- enter and resume life responsiblilties. I am a nurse who works on a busy med surg unit and find my healthcare experience has made me more aware of the discomforts of a hospital stay.
I want to offer words of encouragement to others who have suffered and who still suffer through the residual effects of this syndrome. I also suffer some pain, numbness, weird internal 'shake', etc. There are days these symptoms make me afraid. I gather strength through all of you who still deal with your own battles. Remember you are not alone.

Tanya, Canada
01.2006

Webmaster: Thank you for writing in, Tanya! The support and inspiration from the medical professionals around us are often crucial to our recovery. All the best with the post-GBS residual symptoms!

I am a dental hygienist and i have a patient with Guillain Barre. She presented with peridontitis with patches of extremely red gingiva. I am very concerned with the oral side effects of this condition. Is there any correlation between the disease and her periodontal health, or is it poor oral hygiene? If you have any information to help me I would greatly appreciate it. Thanks so much!

Webmaster: I sent out a query to the NZ support group who have a group of very dedicated healthcare professionals they can consult. Neither is aware of any association between Guillain-Barré and peridontal disease. One of them says further: "If the patient is unable to clean her teeth then peridontal disease may ensue. If the patient has marked autonomic impairment this may lead to a dry mouth (no saliva) and this predisposes to peridontal disease, often resistant to dental care as saliva flow has an antibacterial action. You may wish to ask an academic peridontologist for their experience".
Another replied: "It sounds as if the patient had GBS and then developed severe periodontal disease. If that is correct, then I agree .. that there is no direct relationship with the GBS. Poor dental hygiene is not uncommon in patients with severe GBS because of difficulty in performing the simple tasks of flossing and cleaning. If the periodontal disease occurred before the GBS there is a remote possibility that the infection in the mouth triggered the GBS".
I hope this helps you solve your very valid question. Readers with more information on the subject: please email me for Ms. Holmes contact info.

ATTEINT DE CE VIRUS DEPUIS DEJA 15 ANS PUIS GUERI APRES UNE LONGUE PERIODE MON FRERE A DE NOUVEAU CHUTE; LE DIAOGNOSTIQUE REVELE AUJOURD'HUI LE FAMEUX GUILLAIN- BARRE.
JE VOUS PRIE DE BIEN VOULOIR ME DONNER DES INFORMATIONS PLUS RECENTES A PROPOS DE CE SYDROME TRES PEU CONNU . Y -T-IL DES RECHERCHES QUI ONT DONNER DES RESULATS A CE SUJET?MERCI DE ME REPONDRE A L'E MAIL CITE.

Please add me to the eMail list for the GBS newsletter.
I contracted gbs IN HOSPITAL two days after endoscopy. That was Oct. 14th, 2004. I was hospitalized through the first week of December and then transferred to a re-hab hospital for three weeks. I was re-hospitalized in Jan., Feb., and March, 2005.
Since then I have been at home. I have feelings of "pins and needles" in my feet and hands. It feels like tight bands are on my arms with shooting pains down my right leg.
I would appreciate any information that you may consider helpful to me and/or my doctors.
Thank you in advance for adding me to the newsletter list.
Regards,
Arthur Greenberg
Gainesville, FLorida [case history]
01.2006

Webmaster: Arthur, do try to contact the GBS Foundation in Pennsylvania. They may have a support group in your area. You will receive the next newsletter at the end of the month, thanks for signing up! Also, if you'd like to contact fellow GBS sufferers, there is another gentleman from Florida who wrote in a couple of years ago, check the older readers comments for his email.

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