---------------

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

---------------

Hello,
My name is Trisha, and I am 17 years old. The last couple of weeks I have been diagnosis with GBS. I am now in a recovery stage where I am learning how to walk, and do everyday chores all by myself! These have been the hardest weeks of my life. I got one test after another preformed on me and the pain was unbearable. I wanted to thank you for sharing your site with me. GBS was unfamiliar with me, and my parents were to scared to tell me what was going to happen to me. Your site provided me with a lot of details that I needed to hear to be able to go on. I was wondering if you have had GBS once already is it an on going thing? Will I keep getting GBS in the future? Can it be just a one time thing?

Thank you
Trisha
04.2003

---------------

To My Lifesaver,

I still remember that day when I was lying on that I.C.U bed and every one was busy in the crush in the room just opposite to my room, when suddenly the ventilator tube came out and I was lying helplessly on that I.C.U bed vigorously shaking my head in order to divert someone’s attention towards myself. For about three to four minutes I just kept lying on the bed unattended trying my level best to breathe. I was able to hear my heartbeat in my ears. It sounded very similar to drum beats and believe me it wasn’t very pleasant. I said to myself that this is it, it all ends here for me when suddenly I saw you across the mirror coming towards me.

At that moment I thanked god for all his kindness and especially at the moment when you restored the ventilator to its correct place. Till this day I don’t know what are you like to me. Sometime I thought you were like an eider sister to me but now I have finally realized what you are like to me. You mean every thing to me you are my friend, sister etc. Instead of all these names I am giving a special name to our relationship and that name is “LIFESAVER".

Syed Mohammad Farhan Naseem
03.2003

---------------

Thanks a lot for introducing me to this website. It is very informative and enlightening. My son Mazda is currently 7 years old. Till the age of 4 years he got repeated attacks of GBS hence he was diagnosed as a case of CIDP.
In his first 4 years of life even though he suffered these CIDP attacks he was very smart could talk like a parrot, was able to walk. He was only physically behind kids of his age. He was given monthly IVIGg and long term steroids.

After 4 years of age in addition to his CIDP attacks he started getting
brain strokes. His MRI and CT scans show infarcts in both hemispheres of the brain. In one year's time he got 3 brain strokes. As a result of these strokes my son who was mentally very sharp has lost his speech, lost his swallowing power, developed severe foot drop due to which today he cannot even stand on his feet Currently he is having a Gastrostomy tube in his stomach and all the feeding is done throught this tube.

My questions are as follows:

1. What is the connection between CIDP and brain strokes? Have you heard of any patients who started getting brain strokes subsequent to CIDP attacks?
2. Could the heavy dose of steroids as well as IVIGg injections lead to the onset of strokes in my child who was once upon a time a very smart baby?
3. What are the chances of his recovery.

Please respond to my queries and I shall be very thankful to you.
Regards,
Shehnaz & Kaizad
03.2003

---------------

----------------

Buongiorno
sono un Papà di un bambino di anni 7 nato il 24/05/96 che ha contratto l'infezione da GBS alla nascita (early onset) al 3°gioeno di vita. Mia moglie era positiva al retto e negativa alla vagina, sia che durante la gravidanza che durante il parto non è stato preso alcuna precauzione tipo profilassi intraparto, come tutti i protocolli e le linee guida dicevano anche allora, questo ha portato una sepsi con meningite neonatale da GBS.

Attualmente il bambino sta iniziando a camminare, con scarpette ortopediche con plantari, non parla, ed è in ritardo cognitivo e relazionale, l'unico canale per comunicare è la Musica di MTV, ora io volevo sapere se esiste qualche centro di recupero all'avanguardia a livello mondiale per ciò che riguarda l'apprendimento ed il linguaggio visto che quà in ITALIA non sanno poco o nulla di questa malattia, e se c'è qualche cura per la riformazione delle cellule del cervelo e dei neuroni, e se le cause del mio bambino sono da attribuire al GBS visto che abbiamo fatto una RM negativa e esame cromosonico del bambino e nostro che è risultato negativo, abbiamo un primo genito di anni 11 sano e bellissimo.

Ringraziandovi anticipatamente gradirei ricevere via E-MAIL o Posta tutte le informazioni di scoperte per migliorare la vita del bambino.Genoa Italy Via Napoli 58/4 16134

D'Anna Giuseppe [case history]
03.2003

----------------

My mother suffers from GBS. The syndrome developed at the beginning of the month and by now, she can already walk again (with aid) and she can also manage her own way into the bathroom, etc. She's recovering quite fast, since she's been treated with plasmapheresis from the beginning.
She´ll be sent home in a few days, and I would like to know if she could contribute to her recovery process by taking up Pilates, and when could she do this? I need to know if patients who suffered from GBS have recovered with pilates technique and if it is helpful or not.
Thanx in anticipation.

Vicky Martinez
02.2003

----------------

Excellent site, very informative and non-sensational.

Some non GB research you might want to link to are the "bed rest" studies done on healthy male college student. As little as a week of total bed rest took several weeks of exercise to regain strength and stamina ... and they were healthy young men with unaffected nerves.
Seeing what "just bed rest" does to strength and stamina might help patients who despair over the long recovery period.
After a couple of weeks on a respirator, breathing on your own for 15 minutes is as hard as running a mile. But you can learn to do it again.

I have never had GB, but saw a few patients with it during my hospital career. The one who had the worst case was on a ventilator for a couple of weeks and unable to do more than blink her eyelids for a few anxious days before the paralysis stopped its slow march upwards and started slowly receding. As I recall, it was a "cold" virus that was the probable trigger.
She went to a nursing home in a wheelchair when she was weaned off the respirator and could swallow and sit up with a restraint. She left the nursing home when she was able to feed herself and move her own wheel chair, but still had physical therapy and prescribed exercises. She got a spot on the volleyball team before she graduated from high school, although she tired a bit easily and usually couldn't play the entire second game of a doubleheader. But she played, she giggled, she flirted and she was the ditzy teenager she was before the GB.
Start to finish her episode from "walking around" to "walking around
again" took about two years. Her stamina was still slowly improving when I moved from the area and lost track of her.

The absolutely pound-the-head-on-the-wall frustration of the medical teams treating BG patients has to be seen to be believed. We do our best to stay cheerful and upbeat outside the labs and lounges where patients and their families do not go, but the severity, duration, outcome and even the treatment are still a bunch of "?????" except for the supportive care. The only thing we know is certain is "wait and see what happens next", and "physical therapy is a good thing". The rest varies wildly from person to person.
Using a respirator when the breathing muscles are paralysed is a
no-brainer, but the immune system therapies are of unknown value, although probably useful, because the recovery period can start suddenly after a day to weeks of plateau phase.

"A health Professional"
01.2003

----------------

I was wondering if fascilations can also be a symptom of this disorder, disease or syndrome. I have a 20 year old brother who shortly after getting a very severe sinus infection started coming down with symptoms and phases almost exactly described in the web site, but with fascilations. It’s been approximately 7 months and his symptoms have lightened up allot, but he is still having fasilations and other abnormal sensations. (He has had an MRI and EKG which came back normal)

Any input, direction as to whom else I could ask, or suggestions would be appreciated.

Brian
01.2003

----------------

Hi!
My girlfriend took (after a voyage in france , where she took a diarrhea) the syndome of miller fisher. now she 's in a hospital in Canada.
I live in france and I'm very frightened for her!
Please could u tell me if she will return normal?
I read many articles ...they say that there are not problems after this
disease.is it always true? Please HELP MEEEEEEEEEEEEEEEEE
THANKS
GABRIEL
01.2003

----------------

This is the most information I have seen, and I think you!!!
It is very informative....I was diagnosed November 2002, so this is all new and interesting to me... I appreciate someone taking the time and effort to educate people affected by this, and/or persons trying to learn about GBS for various reasons...

Linda Garrett [case history]
Ohio, USA
01.2003

----------------

I have a question I can't seem to find the answer for. The Doctors seem to ignore the question.

My very good friend was burned badly on the hand as he didn't feel the pan that was burning him. His hand was numb, he was later diagnosed with G.B.S. He recovered with just slight numbness and or tingling of hands and toes.

Our question is could the G.B. make a young man in his early 40s be impotent or have problems with maintaining an erection We can't seem to get a straight answer. Thank you for any help with this matter.

Sincerely
S.K [case history]
01.2003

Webmaster: I am putting together a pageful of information on similar problems, see 'Focus on GBS & Intimacy'.

----------------

My name is Terri.
In August of 1993 I had GBS. I was 21 at the time. I was misdiagnosed when first went to the ER and told them my hands and feet were numb. The doctor told me I was hyperventiling and didn't know it.

Well, less then a week later, I went back because I could barely walk, was not able to move my arms and was starting to get bells palsy in my face. They knew exactly what was wrong with me.

I think the most scary thing was when the doctor told me that I could be on lifesupport up to a year if not longer. When I went in the respirator is when they started the plasma treatments. I still have scars on my arms and a scar from where they had to put a site because my veins in my arms were collapsing.

I still have nerve damage in my face and in my legs I have little reflexes. I have never met anyone else with GBS and I honestly thought I never would since it is so uncommon. When I was released from the hospital I couldn't write my name or hold a cup. I had little to no control over my hands and I still wasn't able to close my eye. I had to wear a patch, I was able to walk because I couldn't leave the hospital til I could.

Thanks for listening
Terri, USA [case history]
12.2002

----------------

I have a friend that is 17 years old and she got GBS. I will like to know how long will it before we can see a change. She is now having double vision she is sooo sad. She can even go to the lady room by herself, she is so hopeless what can we all do to help her?
It has hurt all of us so much to see her this way. Her name is Nicole she is a beautiful young lady and so nice why do this this happen.

Thank you, hope you can give us hope to see fast recovery and see her back on her feet.

Nancy
12.2002

----------------

Hello-
my name is Daniel C Lowe and I was diagnosed with GBS Nov 11, 1999. I recieved Plasmatosis treatments (5) and eventually hemoglobin 5 times.

During this proceedure I developed a staff infection to my lungs and was placed on a ventilator for about four months. I was paralyzed from neck down and lost my voice.
In May 2000 I was transferred to rehab where I was taught to use an electric wheelchair with a little use of arms (my hands were frozen shut).
In July I was sent to Nursing home till Oct when my insurance ran out.
When I left I was able to feed myself and walk a little with the aid of walker and leg braces thanks to a therapist who worked with me.

I now can take care of myself to some extent but am unable to return to my job as a truck driver. Unable to afford any further therapy, I have slowly gained limited use of my legs and hands and continue to struggle to resume somewhat of a normal life. The doctors gave up on me and told my wife I would never walk and would require constant attention. She left in March 2001 when I could barely take care of myself.

My adress is 3628 Concord Rd., Rockford, Tn 37853. My email is dcexpress48@yahoo.com. Phone 865-982-6292. I would like to talk to others with GBS and continue to improve as best as I can. I am 49 years old.
Thanks.

Daniel [case history]
12.2002