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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 is a condensed version.
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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?
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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..".
Webmaster
02.2006
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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.
Regards
Meghana
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.
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My sister have guillain barre syndrome i like
to know what kind of food must she eat.
Charlene Ferris
02.2006
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.
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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
Swinburnered@aol.com
02.2006
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.
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Is the nerve damage caused by GBS irreparable?
Ivan Martinez
02.2006
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.
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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!
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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?
Patrick, Poland
02.2006
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!
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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!
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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!
L. Holmes, RDH
USA
01.2006
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.
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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.
France, 01.2006
Webmaster: I have replied to the writer.
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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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