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In your email,
please note when you had GBS/CIDP/..., describe residual
symptoms or relapses you have suffered since then
and tips or treatment leading to relief.
No responsibility is taken for damage resulting from
readers' use of advice or products published here, see
'Terms of Use'.
---------------
Several patients report that amytriptyline
helps them to calm restlessness and help them sleep.
Others report that quinine helps leg cramps and twitches.
If youhave restleess legs syndrome, Clonazepam may be
the solution you require. Please report any new symptoms
to your doctor as well as your neurologist, as they
may have bearing on your GBS condition.
Webmaster
02.2006
--------
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.
--------
Greetings from the heartland of America.
I am Terry, GBS in progress. I am writing because the
length and constant struggle with this condition is
wearing me down. I wonder if others have traveled a
similar path.
My story begins with a progression of burning, sensitive,
iritated
sensation under my skin that spread throughout my upper
body and arms over several weeks time in early Spring
of 2005. I noticed my balance was off.
Then over a few months time more problems presented
themselves. My hands began to tremble and tremor, my
ears began ringing, tingling in my left foot and the
little fingers in my hands increased, muscle spasms
appeared, and muscle weakness and pain grew in my thighs.
My speech became jumbled and my left pupil dilated.
I went through draconian testing with a host of doctors,
including one of the top neurologists in the area. This
resulted in a diagnosis of GBS. There was relief in
knowing this and having hope for a healthy future. The
doctors indicated the recovery could be long and difficult.
Their words have proven prophetic.
Over the ensuing months, some things have improved.
The burning skin has gone, the hand trembling has gone,
the speech is normal, and my balance has gotten somewhat
better. On the downside, my leg muscles are shot, I
get quite tired at the end of each day, there's a wheezing
in my throat, and the muscle spasms and tingling continue.
I try to live my life as normally as possible. My sister
is a nurse who has done much research on the subject
to help me along the way. Sites such as this also help.
If there is any advice on what might facilitate a faster
recovery, I would be most appreciative. Good luck and
best wishes to all afflicted with this condition and
those who love them.
Terry
Indiana, USA
12.13.05
Webmaster: Hang in there Terry, you may not notice
it but your nerves are healing. Very slowly, but things
should be going in the right direction. Have you considered
consulting a physical therapist for those leg muscles
and tiredness? They might also help on the muscle spasms.
Other suggestions are welcome - please email me and
I will pass them on to Terry, thank you.
--------
My case began with a dreadful feeling
of listlessness.
There was absolutely no pain involved but the weakness
progressed to the point where I could not make my legs
go up one stair.
For three months the malady was misdiagnosed as a virus.
The blood tests revealed a rise in white cells. I did
go to a physio therapist and underwent all the treatments
they could administer including Acupuncture.
By the time I had lain in bed for practically
all that time, I finally was referred to a Neurologist
who determined that it was, indeed, GBS. He referred
to it as a "mild" case which was ironic as
by that time I had recovered to a great extent on my
own.. forcing myself to go upstairs and use my limbs
as much as possible.
It is difficult to describe the deadly fatigue I experienced.
Loss of weight naturally ensued as I barely had the
energy to eat.
When I did begin to walk, my legs swung out in an awkward
fashion akin to the gait of a person suffering from
MS. I know that the two diseases are related and that
was a frightening development. However, with a concerted
effort to use my legs and encouragement from family
and friends I began to correct this.
It is unfortunate that in spite of many medical visits,
I actually received no help whatever from doctors and
specialists.
My syndrome began 5 years ago and to this
day I have limited use of my arms for extended periods
of time and what appears to be carpal tunnel in my one
wrist. If I extend my right arm back for any length
of time, it feels like it will lock in that position.
Other than these problems, I have made a full recovery.
Lynda
11.2005
Webmaster: Lynda, congratulations on
beating the syndrome! It must have been a very scary
experience. Hopefully, medical personnel have more experience
and knowledge in dealing with this condition today.
Have you considered consulting a physical therapist
to find out if you could benefit from this?
--------
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.
------
Thank you for this site. Every once in
awhile I have checked to see if anyone was writing about
GBS and I feel blessed to have found you this am. I
experienced GBs in 1991. After spending 4 weeks in ICU
(fortunately without a trach or respirator) I was released
to the general floor for 2 weeks then spent another
4 months in a Rehab facility. My physical therapy lasted
about 6 monhts. Even though it has been almost 14 years
since the onset I still have poor balance, I am fatigued
easily and continue to feel exhausted after minor activity.
Because I feel pretty normal and look pretty normal
I believe that my family doesn't believe me when I complain
of exhaustion. After participating in limited activity
( grocery shopping, church, a meal in a restaurant,
washing dishes, sweeping, vacumming & other little
things) I must take to the bed. It seems as though for
every hour I spend on an activity it takes me 2-3 times
that to recover. It seems as if I am on a constant treadmill
pushing myself to perform tasks that leave me feeling
inadequate.Sometimes I have wondered, as I am sure my
family wonders, if I am imagining fatigue. It brings
tears to my eyes just thinking about it. It took me
3 days in bed to recover from cooking a Thanksgiving
meal. I'd like to know if others are feeling what I
have been feeling. I feel permanently disabled even
though I don't like to admit it. Last year I began teaching
part time and feel like a dead man walking after a 50
minute class. My memory nor my critical thinking skills
seems to be improving...that me be old age but it feels
like since GBS my head isn't as clear as it used to
be. Anyway, would love to hear from others.
Mary
10.2005
Webmaster: Mary, if you read the comments
posted by other recoverees, and check the links section
at the bottom of the page, you will see that some have
some symptoms for many years following their recovery.
Please consult your neuro to see if this fatigue is
normal for you, and whether there is treatment you can
undergo, or PT to develop stamina...
------
My name is Ashley and I am 22 years old
and live in the United States. I was diagnosed with
GBS just this past March (2005). I was one of the blessed
ones considering what happened. I am just trying to
understand a few things which is why I am writing this.
I had been tired and run down for almost two years before
the onset of GBS attacked me. I went to a local hospital
and they told me I was fine and that I was just nervous
and then proceeded to give me a shot of benedryl and
then told me to go home. Finally my mom took me to see
a nurse practitioner and she told me that there was
something wrong with my nervous system. To make a long
story short I went through a long line of doctors and
nurses telling me either they didn't know what was wrong
with me or that I was making it up before I finally
found a neurologist who told me I had GBS. Anyway I
couldn't walk on my own for about a month and a half
because my legs weren't working properly. It is now
October almost eight months have passed since I was
first diagnosed. I am currently unemployed and simply
going to school; however, that seems to be taking a
lot out of me. It's hard to walk and my feet and legs
still get very cold and very swollen. I cannot hardly
lift a thing. I'm constantly on edge because of my nerves,
and I'm so very tired all of the time, but the only
thing I'm doing is going to school. All I want to do
is sleep or lay down because I seem to be in a constant
state of exhaustion. I am worried because I want to
have a normal life again, and my doctor suggested that
I exercise everday and I have, just not too much. I
get up and walk quite a bit everyday because of my classes
at school, but that simple action has me tired and unfocused.
I'm thinking about going to the doctor again to explain
my symptoms to him, and see if he has any suggestions.
Currently I need help, once again, to walk or to simply
move from one place to the next, ex : couch to bathroom.
Are there others like me? Are there others who continually
have problems like this? My hair hardly grows on my
legs anymore and they are akward, as it's like having
a toddler's legs, uncoordinated and shaky. I guess the
plus side is that I don't have to worry about shaving
my legs as often, but I am worried about leg problems
as a result to this. What can I do? It's very frustrating,
but I do count my blessings that I am alive and can
still see, eat, hear, and talk. I can't help but feel
like a burden to my family sometimes. I just want to
know if I will ever have a chance for a normal life
and if others months later, after being diagnosed with
GBS, have the same problems as I do. Any help or answers
you can give me would be great.
Ashley Pasco,
USA, 22, Female
10.2005
Webmaster: Ashley, please see your
neurologist soon and mention all of this. Your situation
does not sound normal, and as your neuro has your case
history, he/she can check your symptoms out against
the case history and see what can be done.
-----
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 i
would be very appreciated.
Thank You
Ivan Martinez
manovashotty(at)hotmail.com
01.2005
-----
I had guillain-barre when I was 6 years
old in 1958. I joined the guillain-barre foundation
in 2000. I was so happy to learn that there were others
out there who had this disease. I recently returned
from the 8th symposium and met many others who had the
disease.
I am 52 years of age now and experience
extreme fatigue. I look back over the past 46 years
and I realize i have been putting on a facade as far
as my ability to keep up and be "normal".
I don't think my life was ever normal again after having
gbs and I never regained the energy level I should have
had. I wonder if they know if there is long term damage
to the nerves? Could it be possible that the myelin
does not fully repair itself. I just know my life has
been full of anxiety and feeling like my nerves were
always on edge, but have no way of knowing if it is
from having this disease at the age of 6. In 1958 they
did not have all the treatments that they have now.
There was no ICU, no respirators (we had the iron lung
machine), no counseling by a psychologist as you were
coping with this illness. It was pretty devastating
as a child to have it and I knew it was serious and
that I almost died.
I wish I could have found out more about
this disease at an earlier age. Once I recovered, no
one in my family talked about it much, but as I got
older i had so many questions about it. I think it is
wonderful there are so many websites now regarding GBS
and that people are able to find out about it and join
support groups.
Debbie
12.2004
------
The New Zealand Support Group published
the recipe for "John Preckshot's Neuropathy Foot
Cream" in its December 2003 newsletter. I decided
to publish it here too, please consult your physician
about whether this product is appropriate for your condition
before using it!
"This is a recipe that has been around
for a long while now. Many have found it to be helpful.
See your pharmacist and ask for prices as it has to
be made up, and does not come already prepared:
2% Amitriptyline
2% Baclofen
In a transdermal gel.
This cream needs to be prepared by a compounding pharmacist.
It is used sparingly 3-4 times a day. It is absorbed
very quickly into the central nervous system and is
good for any area of neuropathy pain if applied to the
offending area".
Webmaster
12.2004
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I was hospitalized with GBS on May 23,
2002.
I was fortunate enough to arrive at the ER when I did
as I only lost feeling from my waist down. Therefore
I feel quite fortunate that a respirator wasn't required.
I did however receive 5 plasma pheresis treatments during
my hospital stay.
After about a week after leaving the hospital I returned
as an outpatient for more treatments. Two weeks after
that I again returned as an outpatient for 5 more treatments.
Four weeks after that I again, came back for more treatments.
I later consulted with my doctor and we decided to start
on the IVIG treatments at home. I had hoped that by
now I would be off all medicine but unfortunately it
seems that the medicine only lasts 4 weeks or so.
The depression I've experienced throughout
this ordeal has been horrific. I am no longer working
at my old job as they eliminated my position a few months
ago. Fortunately I am not wheelchair bound however some
days it seems as if I could use one. I have very little
strength in my legs, feet, hands and arms and I'm hoping
with physical therapy that I'll be able to gain some
back.
My biggest complaint is that I can not
stand for a long period of time, my feet and legs experience
great pain and want to give out. My hands and feet are
an ugly color of blue most of the time and ice cold
as well. I'm hoping that this will get better soon so
I can get on with my life!
HL
06.2003
-------
Foot pain: see the comment of a sufferer
in "Foot
pain that is constant". Other sufferers responses
can be read below it.
Sharon
06.2003
-------
I had gbs back in the early sixties and
very little was known about it at that time. I have
been left with a severe foot drop and weakness.
I would love to know what it would feel like to walk
normal and not have people stare. Is there anything
medically that can be done to correct my foot drop.
I currently wear the support brace (apo) around my ankle.
It helps but is still noticable. Anything you can suggest
or point me to in the right direction, I will be greatful.
Helen
Rogers
06.2003
-------
Reply to Arlene's email, see below:
Arlene,
Yours comments are the first I've seen pertaining to
complaints of the mouth (your husband's, that is). While
I have no sensations in the throat, my mouth has been
a real bane.
When I was in the hospital (Feb. 12, 2001 to Nov. 30,
2001), the tongue seemed too big and I "searched"
for a comfortable place to rest it. While I don't have
that problem now, I still bite the tongue more frequently
than before GBS.
The tongue prevents me from forming all words nicely.
The neurologist kindly describes my slur as a "labial
lisp." I can no longer sweep my teeth with the
tongue to search out food particles.
My teeth have a scummy feel to them even after being
cleaned
professionally. When I asked another patient at the
hospital who had experienced GBS years earlier if his
teeth felt unclean, he said they still felt like they
were wearing sweaters. These phantom feelings are caused
by the tongue's nerve damage, I think.
The only time my mouth feels normal is when I am eating
or chewing gum.
All these complaints seem frivolous in light of those
who are in pain and disabled, but they are constant
reminders that I am very different after GBS. Even my
compromised hands are not as annoying.
I'm sorry I can't be of help to your husband, but I
wanted him to know others have strange sensations in
the mouth.
Best wishes,
Suzanne
Goodwin, age 64,
Encino, California, USA
05.2003
-------
I'd like information on the problems that
I'm continuing to have as a result of GBS (acute inflammatory
neuritis, autonomic dysfunction, etc.) I guess I'll
always need IVIG the rest of my life?? What if I want
to have a child and still need medicine? Any support
groups in my area: Westlake Village, CA.
Thanks,
Heather
05.2003
-------
I was glad to find your web site. My husband
(GBS 6/00) has a question regarding heightened sensations
in the throat and mouth. He is unable to swallow and
has annoying sensations that he describes like a "plastic
scrubber stuck in his throat". His doctors have
no recommendations and I've seen little of this mentioned.
I thought there was an article in the "Communicator"
newsletter but have been unable to find it on their
site.
Thank you for your assistance.
Arlene
04.2003
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