Hello everyone

    • Anonymous
      July 6, 2010 at 10:25 pm

      Hello Everyone,

      I’m new to this forum and have been reading the different threads that have been posted. All of them have helped me understand more about GBS and also I have been able to relate to what many have gone through. My name is James and I was a healthy 25 year old male when GBS struck me earlier this year. Here’s a little about my story. At the end of December 2009, I received the H1N1 vaccine and was ill the next day (congestion, feeling weak, etc.). The illness lasted all the way through January and in February is when everything went wrong. On Sunday, January 31st, I slipped and fell on some ice outside causing some pain in my shoulder. Later on that night, the pain progressed until I could not sleep. The next day, I did not have work and layed around all day with pain in my back. On Tuesday night, the pain became so unbearable that I went to the E.R. I was given a shot for pain relief and told that I had probably injured one of the muscles in my shoulder. Well when I got home that night, I had tingling in my hands and knew something wasn’t right. I couldn’t sleep at all that night and when I would try to get off of the couch, I couldnt really move my legs. On Wednesday, I went to work the walking in a not so normal way that even my boss told me that I needed to go home and rest or see a doctor. When I was at work, I walked out of a room and my legs gave out on me and I fell in front of my supervisor and was told to go home. I went to the ER and was finally admitted. Over the next few days, I was given morphine for my pain, while the paralysis started working its way from my legs up. For a week, the doctors could not figure out what was wrong because all of the tests were negative. It was not until my sister called the Neurologist and suggested that I might have Guillain-Barre, that something was done. When he initially spoke with her, he said that I was just having muscle pain due to my fall on the ice. When my sister alerted him to me falling at work, he finally began to think that I might have GBS and ordered a spinal tap. Needless to say, the spinal tap confirmed that I had GBS and everything went down after that. My breathing went and I was placed on a ventilator and a PEG tube was inserted in my stomach. From the middle of February until the end of March, I could not speak and could only shake my head and move a little bit of my hands. On April 12th, I was admitted into in patient rehab and by May 20th, I completed my goal of leaving the hospital with a walker. Now, it is July 6th, I haven’t used the walker since the first week of a June and I’m getting back to a normal life style again. I cant jog a little bit and am independent again. I thank God and all of the people that prayed for me while I was in the hospital because I’m having such a quick recovery. I lost alot of weight in the hospital (went from 170 when I was admitted to 104 pounds when I went into rehab) and now I weigh 146 pounds. GBS was such a tough struggle and showed me that life is very precious and to not take things for granted. Also, it taught me that if you put your mind to it, you can do anything you want. I was told at times in the hospital that I wouldn’t walk again or that I was going to a nursing home, but I told them on my discharge date that I would walk out of there and I did. Because of GBS, I do not let people discourage me or put me down. I want to let everyone know on this forum that I thank you for all of your stories and questions because they have given me more insight into GBS. I wish all of you who like me who are still recovering a quick, speedy recovery. Just know that everything will get better.

    • July 7, 2010 at 6:16 am

      Hey James

      This is a great story! Your speedy recovery is inspiring. ๐Ÿ˜Ž

    • Anonymous
      July 7, 2010 at 8:01 am


      You made great progress, keep it up.


    • Anonymous
      July 7, 2010 at 1:26 pm


      That makes 4 of us including me on here who have been affected by the H1N1vaccine. I had it in November. You can read my story under the Vaccine Forum. I am still struggling. Keep the fight.

    • Anonymous
      July 7, 2010 at 3:57 pm

      [SIZE=”2″][COLOR=”RoyalBlue”]Hello all.
      You all were blessed not luckey. I also got GBS from a flu shot over 2 yrs ago. Mine was mild. I pray you will NEVER NEVER take another flu shot or any shots made from eggs. The flu shot for this year will be for last years flu and they said the H1N1 was blown out of porpotion to scare people into getting more flu shots.My neuroligist said she would prefer me in the hospital with the flu than going through GBS again. Bless all of you (Lakoda)[/COLOR][/SIZE]

    • Anonymous
      July 8, 2010 at 3:46 pm


      I agree that the H1N1 vaccine was blown way out of proportion and they created fear mongering, the media did. I would never have gotten if they did not say that the H1N1 targeted my age group (30s). I have been to h*** and am still on my way back so I will NEVER be getting another flu shot again. ;)The doctors will not admit that the flu shot caused my problems. They keep asking about other viruses. I was perfectly fine before I had the flu shot, now I am not and started having problems immediately afterwards. I can connect the dots, not sure why they don’t want to…argh.

    • Anonymous
      July 8, 2010 at 4:58 pm


      …….I think that there are many components to GBS recovery…………….having a strong, positive will or attitude is definitely part of the recovery equation. But it is not all inclusive……if it were this website would not exist. You are indeed fortunate to have recovered so quickly and I wish you continued success. Don’t forget to get plenty of rest….good luck!

    • Anonymous
      July 8, 2010 at 6:51 pm

      to jessica:

      I would have never gotten the vaccine if it hadn’t been blown out of proportion like it was. The media and government made it like the H1N1 was some serious thing. When I got the vaccine, I asked if its safe and I was told yes. It would be nice if people were provided with a list of the possible side effects of the vaccine. In fact, on the local radio station, a county next to mine has a commercial for the H1N1 vaccine and they say that it’s completely safe. I wanted to call them and say that if you think it is, let me show you some pictures of me from my stay in the hospital.

    • Anonymous
      July 8, 2010 at 11:52 pm

      I got GBS from the November 2007 flu shot; and have not taken a flu shot since then. Last year, the public health authority sent me a postcard noting that I hadn’t taken the 2008 flu shot, and reminding me that because I’m high-risk with asthma that I should take both the H1N1 and flu shots. I was so blasted mad at that, I should have written them and told them all about my new life with paralysis and chronic pain, but I knew it would be a waste of time, since the doc didn’t report it to them.

      The medical staff here in my town know all about what happened to me and all they did was hush it up from the start. They’re supposed to report these cases to the regional health authority. So obviously they didn’t do that in my case, even though the co-ordinator of the flu clinic promised me that she was going to report my case; she even lived next door to me for several years, and saw how physically active and athletic I was for 10 years in this town, until that flu shot wrecked me. The staff here at the clinic are still BS’ing that it only happens to one in a million people, yet there was another sudden severe onset case in the hospital here at the same time I got my reaction, (I heard about that from a nurse who was also my music student at the time); and a few weeks later the city 28 miles away reported one severely paralyzed GBS flu-shot patient’s own story in their newspaper. So that’s 3 cases at least (that I know of) in a population of about 100,000. How many more are undiagnosed, or misdiagnosed due to medical ignorance or willful misrepresentation of the facts so the medical authorities can avoid responsibility and accountability?

      And that pathetic pamphlet that they give out at the flu clinics, when they actually do give them out. They didn’t give them out at the 2007 flu clinic here, and when the reaction set in, I didn’t know what was happening. Weeks later I was looking through my files from previous years to find the one pamphlet they ever gave out about the symptoms to look for during a reaction. And even that pamphlet only noted: dizziness, pain, weakness, muscle aches. Sheesh…you’d think they were describing a little touch of the flu. But we all know that’s not what happens when you get GBS. And it doesn’t just go away like the pamphlet says it does. We have learned the truth the hard way.

      And even now, the medical staff are stonewalling my situation, and are silent. A lot of good they did me. I’ve lost almost everything in the way of employment. My body is a wreck. My mind is still recovering from the stroke symptoms which came along with the paralysis. And did they give me any medical treatment, counsel, support? NO. Almost 3 years of this agony, and all the doc did was take notes and get up and walk out of his office door again and again without comment, leaving me in my pain and crippled state to cope with everything alone. And this last year has also been one of more loss and pain and exhaustion. I’m trying to downsize these days, as it is the only thing left that I can think of doing so I can cope with my life, which is now a very painful struggle. My year’s employment income last year was $2,318.00 and I’ve been living on that plus my emergency fund. I can’t even qualify for welfare until my money runs out. And the medical staff have my diagnosis up in the air; I’ve submitted to as much of their tests as I can, and it’s actually done further harm to my body, and left me in a worse state than before to cope with the demands of my work as a music teacher. It is also harder to walk now; my feet and legs are worse and more swollen; I show them that, but again no comment or treatment. The last doc however did press hard on my swollen legs in many places causing me to shriek repeatedly and have bruises for weeks. That was the extent of the medical treatment I got. She also didn’t believe what this site says about GBS/CIDP and what the diagnosed patients say, because “you can’t trust the internet”. So I’m in the hands of people like this, and the only peace of mind I have is when I avoid them entirely, because they’re such a pack of unconscionable divvils.

      Look, if you can find some practical help and support and understanding here, we’re here for you, and we certainly sympathize with what you’re going through. Our bodies can and do heal to a certain extent, so some things get better, but it takes time and there’s a lot of suffering; learn to develop tremendous patience and endurance, adjustments all the time to your own life’s responsibilities and your present capabilities. I wish you healing and the will to endure. God knows you and what has happened to you, and may His healing be at work in you.

      PS: I apologize for my lengthy post and for the tone of it, but if I didn’t have some place to vent my feelings, I’d lose what’s left of my mind.

Hello everyone

    • Anonymous
      September 21, 2008 at 12:02 pm

      Recently 2 months ago I had no motivation for anything and I was sad at the same time. I keep thinking what the future holds for me. am I going to live with depression or anxiety now. I’m 42 yrs old single and never had experience with depression.

      GBS survivor 2004

    • Anonymous
      September 21, 2008 at 5:50 pm

      Hi Sonny! Nice to meet you on the forum! And so sorry to hear that you are feeling so down and depressed. Any of us that have experienced illness will go through spells of depression. And it is very easy to worry about our futures.
      I was diagnosed with Systemic Lupus when I was 33 years old and was very sick for 5 years with no diagnoses back then. I went through alot of depression fearing the unknown and what the future would bring me. I guess you can call me the cat with 9 lives for I have seen other diseases pop up besides Lupus and somehow I alway’s managed to survive the test of time.
      One of the hardest things was worrying about my future. I still worry about my future, but we even have normal folks worrying about the same thing.
      I see you mentioned that you were single! Could that be a factor as to why you are depressed? Feelings of being lonely or all alone.
      In my years of living and I am not too much older than you. Just a few years! But I believe that everybody has a soul mate out there waiting for them. And have seen several people I know around your age that were single and found that perfect person in their 40’s and later got married. Alot of people in the early 40’s also experience divorce to then find that person they wanted in the first place. You are still young my friend and still have many years ahead of you. Keep looking and you shall find!
      Life itself right now can be depressing but mainly because it’s hard on people today. When I get very depressed, I call it a Mind block time. A take whatever it is that is depressing me and just not think about it. Something I have been doing all weekend and have been keeping my mind occupied on other things.
      I put up Christmas decorations, shopped some in Ebay. Went out to my garden and watered my plants. Anything that you enjoy doing is a good time to focus on and it will help relieve your depression. The future though is something we never know what will bring us. 10 years from now, you might be married and have children and everything you wished for in life came true. Or you could see bad health even far more worse than now! So we can’t foretale our futures and I really don’t try to think that far in advance. Take 1 day at a time. One minute at a time! Try to think positive thoughts and keep saying to yourself that you are going to get what you want in life no matter what obstacles come in your way. Enjoy what life brings you in every moment you have. Life is too short and for some of us we may see 90 years old while others may never see 50. I am not sure what you are experiencing with your depression. With me when I get depressed it’s usually triggered by something that is bothering me. My illness, something somebody said. A break-up with the boy friend.. but I am married now.. but that is one painful experience falling in love with someone and then they break up. Love can too be painful! Sonny! I’m pretty sure if we knew all why you are depressed many of us most likely would have some good advice for you. But the only thing I can do right now is send you a hug cyber hug your way and hope you cheer up soon! Hugs! Good luck Sonny! Ever need a friend to talk to email me in my PM’s! I will not let anything out you say! ๐Ÿ˜€ ๐Ÿ˜‰

    • Anonymous
      September 21, 2008 at 8:38 pm


      Sorry to hear you are not feeling 100%.

      People on this site have been wonderful listeners so if you want to chat go for it!

      Can you talk to your doctor about how you are feeling?

      Do you have a good friend that you can go for coffee with and chat?


    • Anonymous
      September 22, 2008 at 12:17 am

      Hi Sonny,
      As the others have said depression is a difficult thing and something that most of us have experienced. I notice that I get upset when I have something on my mind and no one to discuss it with. Especially late at night. Therefore, I have a few close friends/family that i know i can call anytime day or night and discuss pretty much anything and they know they cando the same in return. I also worry a lot about the future and then i realize hey I want to live for today..A friend once told me “when you’re feeling down, look up”. and boy has that ever worked for me over and over. That one simple little sentence can make a huge deal.

      Good luck and remember we are here for you too.

    • Anonymous
      September 22, 2008 at 4:10 pm

      Hi Sonny, I just want to add that if your depression continues, you may require some sort of meds. It is important to understand that it (depression)is a chemical imbalance and sometimes, no matter how hard we try, it takes more than just “will power” or “pulling up our socks” to get past this period. I would never hesitate to discuss my options with my dr. Only a dr. can tell you whether you have clinical depression or not and would then advice you on a course of treatment.

      Take care and feel free to vent here any time. That’s what friends are for. ๐Ÿ™‚

    • Anonymous
      October 1, 2008 at 11:05 pm

      thanks for your support and suggestions. I don’t have much words to say right now in how much can I thank you.

      God bless you.

      sonny/Gbs 2004

    • Anonymous
      October 9, 2008 at 11:43 pm


      I am 39 now and coming up on my 5 year helliversary with CIDP. Email me, I am always happy to help and offer support, my email jerimyschilz at hotmail dot com

      Please hang in there, it does get better and we are here to help.


    • Anonymous
      October 22, 2008 at 3:52 pm

      see you should be happy you name is sonny like sunny day lol.but like most here depression is every day. for me wondering about future and all this. but the best place to find your mate is in church. and best help is bible some may not agree but since aug 05 only real thing that kept me going was jesus love so hope this helps jim:D ๐Ÿ™‚ ๐Ÿ˜€ ๐Ÿ™‚

Hello Everyone

    • Anonymous
      February 6, 2007 at 3:34 pm

      :p just want to say hello to everyone, I had gbs in 2004 and the hallucinations, thanks for that gene, glad I was’nt the only one, I’m just happy to be here, I have the usual aches and pains, I was wondering if anyone else has had problems with there legs concerning lumps? I have a lump on my leg just below my hip thats tender to touch, I’m not sure if its connected to gbs, would be great to hear from anyone. I am booked in to go to the hospital on the 19th of this month.

    • Anonymous
      February 6, 2007 at 11:58 pm

      ๐Ÿ™‚ I hope your diagnosis in the hospital goes ok. I have tenderness in my hips but no lumps.

    • Anonymous
      February 7, 2007 at 3:37 am

      thanks for your reply, its my first time on the site, take care

    • Anonymous
      February 7, 2007 at 9:27 am

      Michele welcome to a place to ask,vent,and just plain relax. You can also get a little insite about what others are dealing with and the similarities with your condition. I accept E-mail if you need that outlet. Come back and post, believe me it helps you and you might say exactlly what someone else needs to read. Good Luck!:)

Hello Everyone

    • Anonymous
      February 6, 2007 at 3:31 pm

      :p just want to say hello to everyone, I had gbs in 2004 and the hallucinations, thanks for that gene, glad I was’nt the only one, I’m just happy to be here, I have the usual aches and pains, I was wondering if anyone else has had problems with there legs concerning lumps? I have a lump on my leg just below my hip thats tender to touch, I not sure if its connected to gbs, would be great to hear from anyone.