looking for people who have suffered from the gullian barre syndrome?
351059
Many years ago, I met a man who had Guillain-Barré Syndrome. He has since died (of a heart attack, not GBS). He didn't talk too much about it, but did say that it made him feel very weak. He was still ambulatory, not confined to a wheelchair. Sometimes, even after just a small amount of walking, he would pant for breath. He said several times that it also caused trouble with his going to the bathroom, due to a lack of muscle control.\n\nYou've probably already seen this, but here's a description of the symptoms of GBS:\n\nhttp://www.guillain-barre.com/overview.html
1038464
i would check with a ms charity as they might be able to help.  but to be honest i don't think you'll have much luck with a mainstream one due to the nature of the disease....  sorry i couldn't be of more help.
875978
AND, WHAT EXACTLY DID THE DOCTOR THAT DIAGNOSED YOU TELL YOU ABOUT THIS?\n\nYour doctor is the one to listen to here not perfect strangers. Even if someone had the similar disease it could very well react differently in everyone. Every case study is not the same.
1097758
yes i suffered with this condition as a child and know horrible it is first hand.  I used to have fits in public and it was so embarassing having loads of people gawping at you and calling you a spaz.  I used to take medication for it - the consulant started me on epinutin which made me like a zombie, 3 years after that they changed it to epilim that did me no good whatsoever, then they put me on tegratol which i stayed on until i was 13 and eventually weaned off.  I have now been fit free for 16 years but its still possible for me to have fits but only through severe pain its just lucky i know the warning signs, its different for each person but for me firstly i get a ringing in my ears ( like the ringing sound you hear when you switch on a TV) then my head goes all fuzzy, i start to see starry patterns in front of my eyes, then the ringing gets louder, the fuzziness gets fuzzier then nothing just blackness!! i hope i have been of some help, but there are plenty of websites offering a wealth of information, the british epileptic association being one of them, i just wanted to share my personal experience of the condition and hope that your friend is ok.
710742
Guillain-Barré (Ghee-yaw Bah-ray) Syndrome, also called acute inflammatory demyelinating polyneuropathy and Landry's ascending paralysis, is a disorder of the peripheral nerves, those outside the brain and spinal cord (peripheral nerves and spinal roots are the major sites of demyelination in GBS patients). It is typically characterized by the rapid onset of muscle weakness and often, paralysis of the legs, arms and breathing muscles. The cause of Guillain-Barre' syndrome is not known; and why the disorder only occurs in certain patients is still not known. Research to date indicates that the nerves of the GBS patient are attacked by the body's own defense system against disease-antibodies and white blood cells. As a result of this autoimmune attack, the nerve insulation (myelin) and sometimes even the covered conducting part of the nerve (axon) is damaged. \n\n\n\nit took me about 2 years.
521699
Guillain-Barré (ghee-yan bah-ray) syndrome is a disorder in which the body's immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances, the weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until the muscles cannot be used at all and the patient is almost totally paralyzed. In these cases, the disorder is life-threatening and is considered a medical emergency. The patient is often put on a respirator to assist with breathing. Most patients, however, recover from even the most severe cases of Guillain-Barré syndrome, although some continue to have some degree of weakness. Guillain-Barré syndrome is rare. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally, surgery or vaccinations will trigger the syndrome. The disorder can develop over the course of hours or days, or it may take up to 3 to 4 weeks. No one yet knows why Guillain-Barré strikes some people and not others or what sets the disease in motion. What scientists do know is that the body's immune system begins to attack the body itself, causing what is known as an autoimmune disease. Guillain-Barré is called a syndrome rather than a disease because it is not clear that a specific disease-causing agent is involved. Reflexes such as knee jerks are usually lost. Because the signals traveling along the nerve are slower, a nerve conduction velocity (NCV) test can give a doctor clues to aid the diagnosis. The cerebrospinal fluid that bathes the spinal cord and brain contains more protein than usual, so a physician may decide to perform a spinal tap.
42756
Sounds like peripheral neuropathy. See a neurologist.
293798
I think that anyone that had a particular disease, illness, or disorder benefits best by joining communities whose members are having the same experience. \n\nThey can talk with you about the best ways to cope, point you to things that have worked for them, for instance, should I walk or swim for exercise? They can help you find resources for any equipment, etc. that you may need.\n\nAnd bless them, they can help you find some small humor in it all to get you through the day.\n\nI've included a few links below that I hope can be of some help to you. Some of them have message boards on the site, some point you to other sites with MS Support boards.\n\nMay you have many good days as well as humor, friendship and companions during this journey.
811756
Have you contacted your local hospice?  Please do.  They will get you help.  Also contact your parents county department of social services.  There is plenty of help out there that they have already paid for with years and years of tax dollars!\nAlso contact the Guillain-Barre Syndrome Foundation:\nGBS/CIDP Foundation International\nP.O. Box 262\nWynnewood, PA   19096\ninfo@gbsfi.com\nhttp://www.gbsfi.com\nTel: 610-667-0131\nFax: 610-667-7036
882928
I was discharged from the Navy with a condition that they never fully determined.  They ran a few tests and ruled out a lot of things but they could never find anything that included all of my symptoms.  I looked up the symptoms of Sarcoidosis and I have almost all of them.  I am going to go to my specialist ASAP and see if that could be the mystery disease.
12168
I am a sufferer also. There are many treatments which you may find helpful. I have lots of resources that would require me to email the pages to you [they're obtained through college databases]. I'd be more than happy to email them to you if you're interested. [archnarkiegirl@yahoo.com]
451581
a friend of mine was wrongly committed to an institution. he told me that the electric shock therapy that he received would render him unable to talk, he could hardly move afterwards, they woke him up every morning at 5 and strapped him to a chair and shocked him. His family would come to visit in the afternoon, he would sit in a chair unable to talk to them, unable to sit up straight, they would ask the doctors what was wrong with him, the doctor would shake his head, and they would walk away and cry and he would cry. \n\nI feel deeply sorry for anyone who has undergone this sort of thing.
611430
sorry to hear that your friend has got it. i found this site which is a story about a woman who has it. its probably worth reading becasue it kinda gives u insight to what someone with hep c thinks of ect
190788
i dont know about melbourne, but you can look up diabetic neuropathy on the internet. also talk with the drs that diagnosed him or the hospital. my neuropathy is very mild and i have trouble gripping things in one of my hands, but no pain. also he should strictly follow his diet regimine and if taking medication definitely do it.  also try the american dibetic organization im not exactly sure what the proper name for it is sorry. try Mayo clinic sites too, in usa
179951
It's spelled Guillain Barre Syndrome. Just google it and you'll get plenty of info.
663449
i think you mean Guillain-Barre Syndrome....
730933
Demand a second opinion. Positive note I had similar symptoms for years rarely a day off. I had a brain scan, a EEG and other tests turns out I have hemiplegic migraines - very scary. I have an aura with mine - a bad taste often triggered by what I eat or smell. Gloss paint sends me off my legs for up to 2 weeks. I was investigated for having a stroke! Go back an see your Dr if symptoms don't improve and demand further tests! Have allergy/ sensitivity tests done, mine showed my triggers as being corn, melon, larger etc. I changed my diet and took FEVER FEW natural health supps and have made a fantastic recovery, with the occasional relapse. I f your symptoms are new to you and you have had no further investigations than a DR appointment, go back and demand more. Take a friend or relative with you if your reluctant to push the issue. You only have one life - enjoy it. Luv J xx