• Anonymous
      August 24, 2010 at 4:19 pm

      All. I am new to this forum but not new to this disease. Original diagnosis was MADSAM but changed to CIPD last year. I have read through thousands of posts here and have seen that this disease is not terminal. Yet as it rages through our bodies we become wheel chair bound, we loose control of our bodily functions and we atrophy. How is that not terminal? Not to be cheeky but it seems to me that the more severe cases are terminal. Just as all cancer is not terminal not all CIPD is terminal. Yet can we make a blanket statement that it is not a terminal disease.

      Just curious

    • Anonymous
      August 24, 2010 at 7:12 pm

      Did a long post, almost finished…then poof!
      Tried a PM & same thing! 😮
      Just know you are not alone.
      Learn, don’t give up, nor expect the WORST! and go kick rear-ends! 😎
      Remember? It’s OK to be grumpy some days? Just don’t take it out on others.
      You mite need them in the future, ya know? So, grump here!
      Hugs and hope!

    • Anonymous
      August 28, 2010 at 9:57 am

      Thanks for the reply. I think where I get the most frustrated is I have given up on a cure and just hope to find the treatment that slows it down. I have never quit anything in my life but now feel like I have quit the biggest challenge ever. I am lucky because I am still working, my girl is sticking by me, but as this disease disables me moe, as I am in more and more pain, and more tired from simple everyday tasks, I just pray I do not get worse. Tremors in my arms, face, hands, left leg no longer functional, right leg now has foot drop. As it rages and medical science gives it the old college try my desire is slow it down enough so I have one more day where I can kind of walk, one more day where I can type, one more day …….not cured just one more day…..


    • Anonymous
      July 21, 2010 at 10:20 pm

      Can you have normal blood test, normal ncs, and be ruled out
      having CIDP?? I thought I read before the only way to determin a dx of
      CIDP was a lumbar puncture. Is there some kind of new blood test now that confirms this dx??

      Thanks Guys,
      Miss Judy

    • July 22, 2010 at 10:37 am

      Not that I know of. However, CRP can be elevated with an inflamatory process, but not always. ncv/emg also is usually a good indicator, but some on the site have had normal results. Have you never had an l/p?

    • Anonymous
      July 22, 2010 at 1:08 pm

      I got the email you sent through the forum and replied to it, also sent an email to your home email to let you know I replied.

      If you didn’t receive either and still want to hear from me, let me know and I will re-write/resend.

    • Anonymous
      July 23, 2010 at 10:18 am

      Miss Judy,

      It is my opinion that there is not a blood test to definitively diagnosis CIDP in all cases.

      The NIH offers this: “Exams and Tests An exam shows:

      * Loss of muscle mass
      * No reflexes
      * Paralysis
      * Problems with the senses
      * Muscle weakness
      * Sensation problems on both sides of the body, moving from the arms and legs to the center of the body

      Tests may include:

      * Electromyography (EMG)
      * Nerve conduction tests
      * Nerve biopsy
      * Spinal tap”

      You’ll notice, unless I overlooked it in the original article, that ‘blood test’ is not included.

      In my case, and every case is different, even the EMG/NCS results are not interpreted the same way by all the doctors. I did not get a diagnoses until I had a very specialized nerve biospy.

      Bt the way, my spinal taps have all been at, or near, normal.

    • Anonymous
      July 23, 2010 at 11:46 am

      Thank you all for your reply, I had 2 EMG, 1 early on, about a year before my
      dx, and 2 ncs, I’m checking into getting the results of the latest test but I
      think they were o.k.. I definately have had all the symptoms which were
      beginning to improve with my IVIG treatments, until my insurance co. stopped
      them. Now that I started them again, I’m hoping they will help again. I have
      never had any biopsy done or spinal tap or l/p. All I know about my blood work is in the beginning when I wsas told I had this CIDP with anti-mag,
      my anti-mag which was suppose to be around 2,000 was 13,000 and my
      white blood count was low. Its hard to remember everything, however, I tyhink now its o.k. Thank you all, sorry for my typing. Bless you all.


    • Anonymous
      July 23, 2010 at 3:02 pm

      ms. Judy,

      Your thread led me to do some research.

      First, from the NIH: “We evaluated distal compound muscle action potential (CMAP) dispersion in 29 patients with anti-MAG/sulphated glucuronyl paragloboside (SGPG) neuropathy (titres > or = 12,800).”

      So, your numbers at, or near, 12,000 fit this profile.

      Full article: [url][/url]

      Second, also from NIH: “Peripheral neuropathies associated with IgM monoclonal gammopathies, with or without reactivity to myelin-associated glycoprotein (MAG), are the most difficult cases to treat as there is not enough evidence for any treatment to be recommended .”

      This may provide a clue as to why your insurance declined coverage.

      The second article is here: [url][/url]


    • Anonymous
      April 2, 2008 at 7:47 pm

      [COLOR=darkorchid]Hello All,[/COLOR]
      [COLOR=darkorchid]I have a question, How do you explain what is wrong with you to others? This may seem like a dumb question but I’m unsure how to explain to others what is wrong with me. I got sick with GBS in 2005 and I still have problems so I don’t have GBS but yet GBS is what cause the issues I have so how do I tell others in a way that they can understand? Cause when I do explain I see that they just don’t get it!!!!!!!!![/COLOR]
      [COLOR=darkorchid] Thanks [/COLOR]

    • Anonymous
      April 3, 2008 at 2:19 am

      I tell people that ask like this Guillain-Barre is when your antibodies attack your nerves. All patients recover from Guillain-Barre in 2-8 weeks. About 5% of them have damage to the nerve itself (the axon). The others have damage to the myelin sheath or the covering of the nerve. Most have residuals from the attack, but the lucky ones who only had their myelin sheath attacked can and normally have full recovery in time. I’m one of the 5%. My residuals are pretty much permanent or may take much longer to recover. I don’t even know if this is totally correct, but people seem to understand it better this way.

      John GBS – 3/13/04

    • Anonymous
      April 3, 2008 at 7:21 am

      I just tell people I have nerve damage from a severe past neurological illness, and occasionally I’ll go into detail about GBS if they seem interested, but often I will not. No one seems to question the nerve damage explanation. It’s simple, straightforward, and unequivocal.

      I know I’ve read from several people here that they describe CIDP to others as being “like MS” and that seems to work well, but for those of us with GBS, that description doesn’t quite work for the long-term. However, if people are trying to understand what GBS was like for us back in the acute phase, I do think it helps to describe it as being “like a one-time attack of MS.” Most people are familiar with MS, whereas GBS is quite a mystery.

      I hope that helps!

    • Anonymous
      April 3, 2008 at 8:46 am

      I like to tell people that I have a nerve disease that is in the same family as MS, and if they push will explain to them that your nerves are kinda like the wiring in your home or computer and that with this disease the insulation on your internal “wiring” gets full of holes so that the nerves short against each other and stop sending the proper signals to the various muscle groups.

    • Anonymous
      April 3, 2008 at 7:10 pm

      Thanks to ALL, you have given me some good ideas!

    • Anonymous
      April 3, 2008 at 7:37 pm

      I went through the same thing Tammie. Being a nurse I was Deputy Top Dog trying to explain stuff in the beginning and no one got it. I very quickly say I have something like MS in the peripheral nerves instead of the central nerves. You had something like MS in the peripheral nerves and still have some leftovers that may or may not go away. Like others said, I find I don’t get as many blank stares with this explanation.

    • Anonymous
      April 4, 2008 at 10:59 am

      When I got GBS the first time my (then) 15 year old son told everyone I had Gilligans Island;) . Works for me.

      GBS-MFv 1993 and 2004

    • Anonymous
      April 5, 2008 at 8:57 am

      I have had the same problem trying to explain the effects of CIDP. I’ve found that there are several categories of individuals who ask. They range from those who are actually concerned to clueless.

      For those who appear to be actually concerned I try and tell them that the immune system has declared war on the insulating material around the nerves that carry signals to and from my arms and legs. This means that the signals lose strength as they they travel to and from the brain. The result is fatigue and loss of feeling in my feet and legs. Of course the next question is what caused this. The only answer I have is that there are something that happen to us in life we will never know the “why”. That is where faith and hope come in to play.

      For the clueless I usually tell them the same thing except I tell them that it is caused by a side effect of an extremely high IQ and old age and they do not have to worry about CIDP effecting them when they get older. Of course this only makes sense if you are my age. :rolleyes:

      The only real problem I’ve run into is trying to explain to my two dogs why were aren’t taking two mile walk each morning and evening. Funny thing is that they seem to understand.

    • Anonymous
      April 7, 2008 at 12:01 am


      I love what you say to the clueless, you made my day with that one!!!!!!!! LOL

      You know I found that my dog seems to understand when I dont feel good too. He just seems to get it.

    • Anonymous
      April 7, 2008 at 11:57 pm

      Hey Alma, my dad told the hospice nurse who is helping my mom that I have “Green Beret”, lol.

    • April 8, 2008 at 3:12 pm

      I just say Kevin has an autoimmune disease, his immune system is overactive. Then I ask them if they have allergies, diabetes, eczema, they usually say yes to one or more. Then I tell them they too have an autoimmune disease, and that each disease attacks different things, be it sinus’s, skin, kidneys, or in Kevin’s case, his nerves. If they want more info, I tell them the whole demylienation process, but most are just happy to know that it is not contagious and others have autoimmune diseases too!


    • Anonymous
      November 30, 2007 at 12:49 pm

      I was wondering is there anybody that more than one person in there family that has GBS.

    • Anonymous
      December 1, 2007 at 7:11 pm

      Hi Ann,
      I can’t remember who it was but someone on here has GBS and then their daughter was diagnosed with it while she was at college. I was diagnosed in 2003 and I have a cousin that was diagnosed with it approximately 20 years ago. We both exhibited different symptoms and totally different recovery.

      Be patient and others will respond.

    • Anonymous
      December 2, 2007 at 1:06 pm

      Ann, why do you ask? Please share more about what is going on that compelled you to post this question.

      You know, there is NO data to support any genetic lineage or that GBS is transmutable to family members, else we would see it on these forums. Perhaps there is the rare incident, but no trends you should worry about… be more concerned with lightning storms and low flying planes!

    • Anonymous
      December 2, 2007 at 2:21 pm

      I think I remember there may have been someone on the forum that did mention a family member that had GBS as well as themselves – will try to remember and post if I do.

      Regarding CIDP, If I recall Doc David (DavidBod – who has CIDP) said his daughter had been diagnosed with CIDP too a little while ago,

    • Anonymous
      December 4, 2007 at 6:09 pm

      I haven’t been on for awhile but my son got gbs in basic training after he got his shots and now has a baby on the way. I also have a daughtor that has a baby on the way and they want to give them flew shots. Just wondering if they should take it.

    • Anonymous
      December 5, 2007 at 1:05 am


      to each their own. for me – never! take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      December 6, 2007 at 5:51 pm

      When you really think about it, WE ARE FAMILY!!! Go Pirates!!!!!!


    • Anonymous
      November 10, 2007 at 2:59 pm

      Can someone please help me out with this?

      I’m going through reports from Emily’s MDA dr from last year. One report is talking about the results of her brain & spinal MRI’s. There was a note made of ectopic cerebellar tonsils.

      I Googled that & info on Chiari Malformation came up which is interesting because Emily’s first brain & spinal MRI’s, done when she was first dx’d, showed an 8 MM Chiari Malformation.

      So, are ectopic cerebellar tonsils a Chiari Malformation or do they cause a Chiari Malformation?

      I am SO confused! When the MDA dr was going over the MRI results with me in person she said that Emily had enlarged tonsils. But since Emily has never had a problem with them that they weren’t a problem & didn’t need to be removed.

      Any insight would be great.


    • Anonymous
      November 10, 2007 at 3:52 pm

      I think I might have the answer to my own question.

      Emily was dx’d with an 8 MM Chiari Malformation. A Chiari Malformation happens when the tonsils grow outside of the area they are supposed to be in. So, since Emily has giant tonsils they’ve gone outside the normal area.

      There is a possibility of the tonsils interrupting the flow of CSF from the spine to the brain. If that occurs then that is when surgery takes place.

      Now I need to find out if we should have Emily’s tonsils removed & if that might make a difference in her recovery. And if it’s possible to have her giant tonsils removed since they’ve grown outside of where they should have. I read on [url][/url] of 1 person being cured of CIDP after having their tonsils removed. Now I’m wondering if that person really had CIDP or if it was just a Chiari Malformation.

      Just more to research, I suppose.

      Kelly (addicted to Google today!)

    • Anonymous
      November 10, 2007 at 6:34 pm

      I think I can help a little here. Tonsil is referrring to the appearance of the part. Most of the time when people talk about tonsils, they are the round things at the back of the throat that get inflammed with strep throat because of being made of lymphoid tissus (that fights infection). The cerebellum is the back of the brain important in balance and coordination. These are most commonly referred to a hemispheres, but can be called tonsils because they look like tonsils and lots of medical names were made centuries ago and are descriptive not functional. The ectopic (out of typical place) cerebellar (referring to the cerebellum) tonsils (round pitted appearing parts) can bulge down enough to cause problems like headaches (or most commonly not). There is a continuous from normal to a variant of normal to Arnold Chiari malformation when the bottom of the cerebellum can dip into the opening from the brain to the spinal canal. From what you have said, you can be reassured that her tonsils (in the back of her throat) do not need to be removed because of this illness and one really does not want to remove parts of the brain (!). It sounds from what you said from the report that the radiologist was only being complete and saying anything that was a tiny bit different in Emily. This does not mean it is related to the CIDP, but it does give information if in adulthood she has bad headaches, her doctors could think about if due to changes over time from a tendency to have a Chiari type malformation. Tonsils (in the back of the throat) are “normally” large in children because the immune system is very active in learning to protect against infection. Tonsils do not have to be taken out unless they are huge and interfere with swallowing or breathing in night (usually more due to adenoids in the back of the nose). I do not know why someone got better from CIDP after having their tonsils out, but would think it is true, true, and unrelated like the brain report on Emily.
      With Hope for cure of these illnesses (and understanding)

    • Anonymous
      November 11, 2007 at 8:38 am

      Thanks for the info. It’s so confusing when they refer to tonsils but they aren’t really tonsils.

      The reason I was questioning to remove her tonsils or not was because both my husband & I had problems with our tonsils as children & had them removed. I also had my adenoids taken out at the same time. I looked at her tonsils last night & they are big. I’ll just wait until she sees her pedi (I’m sure we’ll be there sometime during the winter) & ask him about it.

      Thanks again.


    • Anonymous
      September 14, 2007 at 12:14 pm

      How do you ever feel like things are going to be ok after taking care of a GBS patient/family member?
      My husband asked me if I had gotten complacent thinking he will be just fine.
      I said “no, I have been waiting for the other shoe to drop”. He thought that was funny. Then Nate got infected kidneys.
      I wonder what will happen next? I wonder if I will ever relax and not feel this way?
      Trudy, natesmom

    • Anonymous
      September 14, 2007 at 2:23 pm

      yes I would get to where i thought that I would be normal or as normal as I was going to get and then I am thirty steps backwards. I am back to the way I was. I don’t think that we will ever be better we just need to keep on top of our doctors and our health so we can live as comfortably as possible. And pray that our doctors are determined enough to come up with a new med/cure for this.:rolleyes:

    • September 14, 2007 at 7:24 pm

      I am obsessed about thinking what will come next! One day Kevin is off riding his bike or playing football for hours on end with his friends, and then another his legs are tingly and wobbly and numb from the waste down. I wonder what is ahead for him as puberty hits or if he will ever get married. I wonder who will take care of him if I die prematureley because I am so fat. Then there was thirty seconds ago when I hadn’t thought about it for about 8 hours. Thats a record for me!!

      I am going to try to hold out hope for a cure someday, or a vaccine, that gbs’ers can actually take that would keep them immune from other immune issues! How dumb does that sound?

      Somewtimes I think comming on the site makes me dwell on the situation, but it is so important to have contact and support from others who really understand. Plus, when I get to reply, it makes me feel better.

      Oh well, I really am trying to do better about dwelling on the situation, and I should try harder for my well being and Kevin’s.

      Dawn Kevies mom

    • Anonymous
      September 15, 2007 at 2:36 am

      my girls spent their time trying to make my life easier which of course their constant questions of how are you how do you feel and the rest of the world allways asking me how i am feeling allways made me think about it more and more. and then it consumed my every minute and my smart kids realized that we were hurting us more than helping us by focusing on what we could not do any more. so I promised them that no more feeling sorry and going out and doing everything we can to enjoy this life we have together.

      we went to florida this year I know that you cant ever get away from it but boy oh boy did we have fun and there was not computers just good old fashion family and the ideas of illness were few and far between. And we learned this year that we don’t have to travel 2,000 miles to get that feeling of good life . My girls said that I have to just let myself go and enjoy it all cause life will happen with or without us and its way more fun if we are all diving in head first. I spent all my time worried about what would happen to my girls and focused on what I could not do instead of what I can do and what I want to do.

      my big fat body went into the ocean and did not care, I went on all sorts of rides at universal and we shopped till we all droped. It was so much fun that we went early june and we have all been more relaxed and carefree that we all feel better.

      so to sum it all up take time to something everday for yourself and your family that you enjoy and helps you clear your mind. going to family activities playing computer games (i play POGO online) you will feel better and so will they (CALGON TAKE ME AWAY).

    • Anonymous
      September 15, 2007 at 12:43 pm

      I’ve been playing Pogo for about 6 yrs now. I love that sight. It does help to take your mind off of things and it helps keep you sharp sometimes.
      Nate has been on it that long too. My husband of 2 1/2 yrs turned into a Pogo addict when I showed it to him. LOL
      I will pm you and tell you what my user name is there and my favorite games.
      Trudy, Natesmom

    • Anonymous
      September 17, 2007 at 7:33 am

      Well I worried about all those things before I got GBS and I have not stopped thinking about them. My Son is going to be 33 in February. I think that is not part of being the caregiver of GBS person, but a very big part of being a parent! I think having GBS has cleared my mind of the things that are not important in life. I have become complacent with other things but not with family life. I have learned what is important. I have tried to keep doing what we did before I got ill. We do participate in those activities but we don’t spend as much time as we used to. We were never late arriving, but now we are always running late. It just takes me longer to get ready. We leave parties and events before they are over. I don’t make any excuses for myself and some don’t understand. I know I have only been in this situation for 23 months but I feel that I am learning each day how to live with my new lifestyle. Do I worry? YES Do I get depressed? YES Do I get frustrated? YES Do I get angry? YES Do I wonder why me? YES Do I get mad at family and friends for not asking if they can help with something? YES (I would say “Nope we are fine, but Thank you for offering!”) Am I stubborn? YES Am I scared? YES Do I have good days and bad days? YES Am I looking forward to my husband being able to retire? NO!!! LOL I think those are all normal answers. Will life be easier having him home all the time? YES it probably will work out! Am I looking forward to the retirement party? NO!!! I don’t want to talk about it! He will be here all day and cleaning up around me ALL THE TIME! I will not have times that are quiet and I can not take naps when I am tired. OH bad to Nate! He is being a boy and that has to make you proud. As he gets more experience with the effects of his illness he will be able to manage his life better and have fewer relapses! That will not stop you from being worried. He will also become independant and that will knock your socks off too! Worry had not changed anyone! If you move on to the next level of caregiving and are less protective you will see it will have a good effect on your life too. You will be able to do more for yourself and be less stressed if you let it go. Rather than be worried for one person you can make it a broader problem and worry about the whole family. What can we do next Summer for fun and all those other enjoyable decisions. Open up the lines of communication and have family meetings and make plans for the future before he grows up and moves out! That is where I am now and I will still worry! I will still wonder. But I don’t play that game of WHAT IF…….any more! I have learned to let things go and let them be his decision. Now I am amazed how fast those years have gone by! I wonder if he will stop in around dinner time? Should I make extra? Did he pay his rent this month? Does he have enough food in the pantry to last if his car breaks down? I have to remind myself that worry is not productive. We have brought him up to ask when he needs something….anything! We have taugh him to do his best at any thing he tries to do. But I don’t play that WHAT IF… any more. I hope that you get to that point with Nate soon. You have to trust that if he needs you, he will let you know! Show him how to live, laugh and love! I wish someone would show us that worry is not productive! I will say a prayer that your worries are lifted, so you can enjoy giving him those lessons!

    • Anonymous
      September 29, 2007 at 2:12 pm

      Hi Trudy,

      Who knows what normal really is after GBS/CIDP. Frank and I tried to live life to it’s fullest even though he never regained alot of functions. We went out to dinner, family functions, and the beach whenever he was having good days.

    • Anonymous
      October 1, 2007 at 3:17 am

      I couldn’t even imagine how you feel. It must be so hard to keep a positive attitute, with all the crap life has thrown at you. But as a loving mom you know you gotta be strong for your kid as well as your husband. And baby I gotta tell you, from what you’ve written on the forum, you are doing a GREAT job keeping it together. It’s been quite a while since I’ve been on the forum,(My husband Jacob will be released from Jail on October 14 and still hasn’t gotten ANY treatment. Oh yeah, we’re talking lawsuit!) But that’s a different subject. I remember that Nate was about 6 years old and I asked you about his going to school.
      What do you mean by infected kidneys? Infected with what? Something different than GBS? What kind of treatment is he getting for his kidneys? How is Nate handling things? Do you and your family have a support system other than this forum to deal with the emotional turmoil GBS causes? I’m not knocking this forum at all. I personally believe finding out about it is a Godsend. Especially since people on this forum have an understanding about GBS that others usually don’t. It’s just that talking to someone face to face or voice to voice can also be especially helpful as well.

    • Anonymous
      October 1, 2007 at 4:33 am

      As I mentioned in my reply to you, our family will have a lot to deal with when my husband get’s out of jail. I would like to put a general post up with more details, but I forgot and can’t figure out how. By the way I think you should change your name on the forum to include your name too. I realize everyone know’s you as Natesmom. But if you changed it to Natesmom________ , I honestly don’t thinK it would too be confusing. After all, your not just Natesmom, but a person with feelings in your own right too. KNOW WHAT I MEAN, VERN?


    • August 2, 2007 at 4:32 pm

      Hi all

      I have a question about the difference between a relapse and reoccurance of GBS. I have seen posts that mention a relapse and/or getting GBS again and was wondering if there is a difference and what are the symptoms of either? My resids are worse than they have been and I am just concerned. I have been uncomfortable before but not quite this uncomfortable.


    • Anonymous
      August 2, 2007 at 5:06 pm


      there appears to be a semantics prob cuz there is not a standard we can adhere to. forgetting the words, 2 things can happen. the symptoms for both can be the same. you can get a real gbs attack in which case you need ivig or your residuals can act up. if they act up, 2 things can occur. it can be minor & a few days rest will make it go away or it can be major & even months of rest will be necessary. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 2, 2007 at 6:18 pm

      Well that leads me to another question – what is the difference between GB relapse/recurrance and CIDP relapsing/remitting? I am just not clear on what makes the difference when they seem to have the same effect.

    • August 2, 2007 at 6:24 pm

      Thanks Gene. I too am still a bit confused. I understand, but how would a person know for sure if it was a relapse or just nasty resids? I assume what I am experiencing is just resids since I have had a bit of extra stress, heat, and havent been able to sleep the past three nights. I did manage to sneak in a nap, but we all know that it really doesnt make up for a good nights sleep. I am going to take a few days off to rest…the kids will just have to help out and understand, or go hungry LOL

    • Anonymous
      August 2, 2007 at 7:39 pm

      julie, i don’t know exact answer to your ques. but w cidp, the bad gbs antibodies are constantly or near constantly being produced. like gbs, you could have your residuals acting up or ongoing attack[s].

      fom, since the odds are it is your residuals – major, big time rest in a prone position will make it go away. UR right, the kids’ll have to understand. if you are rapidly sinking & sinking low, or are concerned. you could get another ncv to compare w a previous one. if the new one is worse, it is a real attack & you need ivig.

      take care. be well.
      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      August 2, 2007 at 9:27 pm

      With the GBS and the residuals acting up I can usually think back to what I did the day before and know if I over did it. A morning out with the girls, too many errands planned for one day or new exercise class or rehab instructor used to set me back. Coming up on 22 months and I still have a few bad days after a really busy weekend. But like someone said rest will pick you right back up in a few days! Hope this helps a little. I have learned to listen to my body when out on errands or on the town. I end the trip with a quick retreat home. It is frustrating but I know when my body had has enough. It is better that way than having to rest for a few days to regain my strenght and stamina and deal with residuals.


    • Anonymous
      July 26, 2007 at 4:11 pm

      Hi everyone!!

      I am about a month away from the 1 year mark when I first got GBS.

      I remember back when it happened, the Dr.’s were telling me that the main recovery will happen within about a year.

      I am doing well but my face is still slacking a bit. It has lots its last kick for my smile. It has been about the same for the last several months so should I assume I just need to live with it?

      Most people say they can’t tell but I can and it drives me crazy! It is like my eye doesn’t react properly and my smile is off. I can now whistle again though!!

      Everything else is pretty much back to normal, I just get more tired easily and feel more numbness when I am run down … my cue to get MORE sleep!

      I am just wondering if people have still had more recovery after this point or if I should give up hope and move on. considering where I was … I am very happy and thankful that I recovered this well but my smile sucks!

      Thank you

    • Anonymous
      July 26, 2007 at 7:28 pm


      No, never ever give up hope …… and I know how hard that can be sometimes! There have been people on the forum who have reported progress or improvement years after their GBS attack. There may very well be residuals, but there is ABSOLUTELY NO TIME LIMIT to improvement – even the doctors do not know, specially as each case is different with regard to varient, severity, time to treatment (if there was any at all) etc.

    • Anonymous
      July 26, 2007 at 10:12 pm

      I am just over two years out and I am still improving. I still have some weakness on the right side of my face. It is still slowly improving. Don’t give up hope for improvement.

      Tonya Correll

    • Anonymous
      July 26, 2007 at 10:53 pm


      some docs say 6 mos, some say 1 yr, & some say 2 yrs is the end point for improvement. all are a myth. i did not start to make my better recovery till month 26. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 27, 2007 at 9:09 am

      Thanks everyone!

      Oh I hope you are right and it keeps getting better.

      Thanks again!

    • Anonymous
      July 27, 2007 at 9:58 am

      Thanks Gene. That’s very inspiring to know as I am a little over one year out and feel I have a ways to go still. Good. And I will expect more good to come 🙂

    • Anonymous
      July 27, 2007 at 11:02 am

      As far as recovery, I am at 21 months and still seeing improvements. They are not a day to day thing now like right after onset. They are bi weekly and monthly improvements. Just over this Summer I have had a decrease in drooling from the corners of my mouth. I did not even notice it till someone mentioned they were having that problem and I notice I had not had that problem for over a month. Someone else mentioned the electrical shocks and I thought back I had not had them for over two weeks. WOW now it has been over two months since I had those kinds of pain. I have not had to take any meds for pain. I have had some but it is constantly changing from type to type and stopping and starting between Doctor appointments that I just go with the flow. Figure they are all part of the frustrating process of getting better slowly. Lately I have the burning in my hands that feels like they are on fire. Before I had the kind of burning like my feet were itching and were burning from cold or frost bite. I still have the tight sock or balloons on my feet and the swelling in the ankles and toes and for that matter the legs and feet. It changes daily as I move and exercise. Even the tight feelings in my throat around where the vent and trache was is not as tender and prone to muscle spasms. The fact that my residuals have been ever changing keeps me going. I have good days and bad days. Energy and stamina are still a problem. Just lately the tightness in my wrists, ankles and toes have given in to more range of motion and that has made life more comfortable. I have always exercises and did not give up on an exercise helping an area. Some areas are under the control of the GBS and finally have improved. Back and Abs are still being stubborn. Not from the lask of exercise but I think it just takes time for the nerves that manage those areas to fully heal and start to respond. Hang in there and eat properly and exercise. Keeping those areas moving pays off. 😎

    • July 27, 2007 at 11:04 pm

      I feel much stronger this summer as the second anniversary approaches.
      I have about the same residuals as you have. I have continued physical therapy at home by doing streteches, walking outside, riding excercise bike, walking, walking and walking. I walk nine holes, park at the end of the lot and do some excercises on lunch break. The stamina and flexibility are getting much better.
      Keep on keepin on.


    • Anonymous
      May 11, 2007 at 5:18 pm

      does anyone know anything about getting a first aid bracelet for the resons of letting people know what i have because god forbid anything was to happen to me i wouldnt want them to give me a shot of something(tetnus) and me not know what is going on also i suffer from seizures

    • Anonymous
      May 11, 2007 at 5:21 pm

      Hi Shen,

      Just the fact that you suffer from siezures should warrant a medical alert bracelet. If you’d feel safer wearing one that lists GBS also, then do it.


    • Anonymous
      May 11, 2007 at 10:59 pm

      Hi Terrence, you can usually find order forms for medalert bracelets at the pharmacy. They also have necklaces available. I agree with Brandy, you need to have one for seizures.

    • Anonymous
      May 12, 2007 at 10:23 am
    • Anonymous
      May 12, 2007 at 12:28 pm

      thank you all i just never new where to get one but i called my pharmacy and they told me i can get one there once again thank you


    • Anonymous
      October 21, 2006 at 3:55 pm

      Does the the virus that causes GBS stay in your body or does it leave? Have they done any research on this and is that why we all have these strange things going on with our bodies.

    • Anonymous
      October 21, 2006 at 8:25 pm

      The answer to your question is that: It is not known what causes GBS. The following Paragraph is from the about GBS link on the GBSFI main web page.

      What Causes GBS?
      The cause is not known. Perhaps 50% of cases occur shortly after a microbial (viral or bacterial) infection such as a sore throat or diarrhea. Some theories suggest an autoimmune mechanism, in which the patient’s defense system of antibodies and white blood cells are triggered into damaging the nerve covering or insulation, leading to weakness and abnormal sensation.

    • Anonymous
      October 21, 2006 at 11:19 pm


      it is not a virus that causes gbs dircetly. it is the immune system producing bad gbs antibodies. many factors can trigger this antibody production, a virus being one of them. if by strange things you mean our residuals, the cause is nerve damage. hope this helps. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 23, 2006 at 7:30 am

      What is the virus known as “Polyneuratis ” (I don’t know correct spelling). My Doc had told me that this virus caused GBS to me. Can you throw some light on it, please?

    • Anonymous
      October 23, 2006 at 7:35 pm

      polyneuritis is an inflammation of a many nerves, characterized by pain, loss of reflexes, and atrophy of the affected muscles. along w other words it can mean gbs. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 26, 2006 at 6:08 am


      Also known as AIDP: Acute Inflammatory Demyelinating Polyneuropathy (or polyneuritis). Acute means the illness comes on sudden; inflammatory means there is strong evidence that it is inflammation that causes the nerve damage; demyelinating means there is evidence the damage is primarily to the insulating myelin sheaths around the nerve fibers; and polyneuropathy: poly means many, neuro means nerve and/or nerve root and opathy means disease; so polyneuropathy means a disease of many peripheral nerves and/or their roots, which are the points of origin of peripheral nerves from the spinal cord…aka polyneuritis.

      Best regards.


    • Anonymous
      October 28, 2006 at 1:09 am

      Thanks both of you. If explanations are given in such simple English, any layman (like me) can understand easily the meanings of such medical terms. Thanks once again.


    • Anonymous
      October 14, 2006 at 10:14 pm

      My name is Dave and I recently was diagnosed with GBS. I wanted to ask if anyone else was experiencing significant paresthesias (tingling) in their hands and feet and if so how long did yours persist? I just started taking Lyrica and so far no improvement. Please let me know what you think. Any and all input is appreciated.

    • Anonymous
      October 15, 2006 at 7:25 am

      hi dave & welcome,

      tingling is normal. no one knows how long nor to what degree any one gbser will recover. but with time you will make recovery. rest as much as you can. i suggest neurontin for pain instead of lyrica. lyrica has a chance of causing gbs. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      October 15, 2006 at 7:34 am

      Hi Dave,
      Welcome to the site. Many do experience tingling (paresthesias) in the hands and feet and even a burning sensation at time. I do not know how long it may last. It does seem be less intense with time.
      The following article discusses two residules of gbs paresthesias being one.

      – Residual Effects Following Guillain-Barré –
      Gareth J. Parry
      Consultant Neurologist, Auckland Hospital
      Professor of Neurology, University of Minnesota

      Published in “The Communicator” Spring 2003

      see the following link:

      Six years post GBS I still have paresthesias in my hands and feet.

    • Anonymous
      October 15, 2006 at 12:42 pm


      I take Lyrica for my nerve pain/tingling in my arms/legs/back/face and it helps me. Many people take neurontin because it seems to have fewer side effects. Neurontin actually worked better for my pain than the Lyrica – but I developed an allergic reaction to it so I can’t take it anymore…

      Hang in there…initially this seems overwhelming but you will make it through this!

    • Anonymous
      October 15, 2006 at 5:54 pm

      I am surprised to hear that Lyrica has a chance to cause GBS? I have read all the info about it and the neurologist didn’t mention anything about it. Where did you hear or read this? Please let me know as this is very concerning.

    • Anonymous
      October 17, 2006 at 12:13 am

      Hi DAVE, the info is in the med package-or you can get it from your pharmacy.

    • Anonymous
      November 11, 2006 at 4:16 pm

      I want to add that I take Lyrica, I like it much better then Neurontin. The dosage required is much lower then Neurontin. My energy and memory aren’t affected as much and my pain is less. Talk to your Dr…… sure it lists GBS as an adverse reaction, that doesn’t mean you shouldn’t take it. Many GBS and CIDP’ers are on Lyrica.


    • Anonymous
      November 11, 2006 at 8:16 pm

      i agree w jerimy. if neurontin doesn’t work for you, there are other pain meds you can take. but i would use lyrica as a last choice cuz it can cause gbs. there is plenty of info on this site abt it. the search button is a good starting place. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 12, 2006 at 8:18 pm

      Gabapentin/Neurontin has a small risk of myasthenia, neuropathy, diabetes mellitus.


    • Anonymous
      February 6, 2010 at 3:54 pm

      Hello everyone. I am new to posting her however I read your posts everyday and have found comfort and information with them.
      I was diagnosed with GBS in Oct 2008. Was hospitalized and with the IViG treatments found out I was algeric. Then I aquired Aseptic Meningitis. So only recieved 3 doses. I am getting better.. but slowly. Still have problems pain, tingleing, burning. Hard to walk far, fine moter skills.
      Now I have been diagnosed with multi nodles in my thyroid (goiter). Had the altra sound, FNA and now will go Monday for surgary consult. ALso because of the shortness of breath I have been sent to Cardiolgist. EKG is fine. Echod on Tuesday.
      I have told each doctor that I have GBS (read that in another posting).
      Have to tell you I am nervious.. not for the surgury itself but what if it sets off a GBS “attack”, with me being alergic to the IViG..
      Thank you for all your help with all your postings.

    • February 6, 2010 at 5:08 pm

      Sometimes in the hospital they use s/d, which is powder. Some people have more of a reaction to it. As well, the infussion rate could have been too high, or you could try a different brand. Did you have blood work done to determine if you are truly allergic, or just experience the reactions as many do. My son too had the aseptic meningitis reactions as well and now 3 years later we break the treatments up and it is not as bad. We have been weaning down and things may not be going that good. If so, we may have to get a couple of 4 day loads and I am not looking forward to the pukingm, fevers, pain, etc. Good luck with your surgery. Keep us posted

    • Anonymous
      September 22, 2010 at 11:16 am

      Hello Sue,

      I am so new to this forum I simply have no idea of what to say or to whom to say it.
      I read your comments to another member which mentioned words that had similarities to my thought process.
      My wife is under the care of a neuropothist who has started her on a course of gabapentin.
      She has renal cancer and parkinson’s at present and hypertension and type II diabetes for sixteen years and has suddenly disappeared.
      Extensive pain in hands feet and associated joints have commenced
      The preliminary diagnosis is something called neuropathic diabetes.
      My immediate question to you is this.
      The forum deals with GBS etc.
      Is the burning, stinging/lacerating pain similar or the same as found in GBS?
      I am reaching out to anyone, really, in hope of understanding her condition.


    • September 23, 2010 at 12:09 am

      diabetic neuropathy is not the same as cidp/gbs. They are continual demylienations, (continual with cidp) The pins and needles symptoms are the same, but it is typically in the hands and feet only with diabetic neuropathy. With gbs cidp, the process continues and can affect everything from the feet to the lungs, bowels bladder etc.

      About the parkinsons, some medications can actually cause parkinsonian tendancies (anti psychotics, such as abilify, lexapro, neumenda excuse the spellings) The list goes on. Also, sometimes people with alzheimers are dx and givien these drugs which cause parkinsons symptoms. In reality alot of these alzheimers patients actually get worse on these drugs. Sometimes if people are taken off these drugs the parkinsons symptoms go away
      (medicinally induced) Some of the drugs themselves could be causing the numbness. Many parkinsons drugs also are hard on the liver, but not sure about kidneys, regarding renal cancer. Has she lost weight recently? That could have caused the type 2 to disapate. just some ideas, take them for what they are worth.

      What tests has she had done? NCV EMG? CRP regarding inflamation in the joints? The joint pain you mention would be independant of neuropathy if it is solely joint pain. Rheumatologists are generally helpful as well regaqrding tests, especially if there is joint pain.

    • Anonymous
      September 27, 2010 at 6:56 pm

      CIDP and GBS are classified. And, they can be exclusively muscular [motor], sensory, or autonomic or any combo of the three…kind of like a Chinese menu? Thus harder to diagnose for most neuros and docs.
      Distinctions between diabetic and autoimmune neuropathies are either chemical or in the autoimmune/genetic spectrum. Stuff gets squirrelley and often harder to diagnose w/o good testing and protocols.
      A good site to see is this one:
      url – eliminate the URL’s and go read!
      BTW? I’ve had the ‘burning’ to the point where I felt I’d plunged hands and legs into a huge french fry vat! No external signs of ‘burning’? But BOY IT HURT ALOT! At times it’s either like living under a lot of high-tension wires [ungrounded?] or simply being plugged into some faulty outlet…Keeps on coming!
      There are a series of tests to diagnose CIDP/GBS? This first site is a good start, and look at the tests that are suggested under each ‘condition’ then the testing…
      Take it a step further? with this article: url The charts on this article, are indications as to who is looking how hard for anything if anything!
      Keep faith and keep at it for a good diagnosis! It’s hard at times? But definitely worth it IF you get all the right tests and treatments before real damage is done! Do not give up, please? Not now and keep faith in yourself!
      It mite not be CIDP/GBS, but it mite be something else…sooner to find out? The less stress, wear/tear on you and your family and friends!
      Let us know, how you are faring in this all… it’s often like a baad roller coaster ride? In a hailstorm? But definitely worth it once you get off that ride! You’ll know where you are at, and with what!!!! Then, you and we can help? Can attack it! to the best outcomes that you can get. Hugs and hope!


    • Anonymous
      October 12, 2006 at 12:16 am

      Lately whenever I log on to this site I get a pop-up from my spyware program telling me it(the program), has blocked “EO.EXTREME-DM.COM”…
      Also I do not have a link to the chatroom…
      It used to be on the left side of the contents page…
      Am I the only one having these problems???

    • Anonymous
      October 12, 2006 at 2:13 pm

      I have not had any problems myself, but I have a great IT staff that ensures that the boss’s computer is well-protected … so take my experience with a grain of salt.

    • Anonymous
      October 12, 2006 at 5:28 pm


      You probably have the adware or spyware on your computer, it isn’t coming from this site. Download this program (Spybot) it’s free and you can get it here [COLOR=blue] [/COLOR][SIZE=1][B](cut and paste the link into a browser). [/B][/SIZE]Run that program and it should find and allow you to remove any spyware on your computer. Another good program which also has a free version is Adaware and can be downloaded for free from here [SIZE=1][B](cut and paste the link into a browser).[/B][/SIZE] I use the free versions of both programs and try to keep them up-to-date and run them at least once a week. If you need any help or have any questions feel free to private message me or email me jerimyschilz at .


      PS-I did a quick search on google and didn’t see anything about EO.EXTREME-DM


    • Anonymous
      July 15, 2006 at 2:09 pm

      🙂 I got gbs in Dec 2005 Acute Axonal Motor Neuropathy and was just about a hair from a vent, I have had ivig, someone had to feed me whan I could eat. I am doing pretty good now out of wheelchair and walker and on a cane, and am on 800 mg of neurontin 3 times a day still have pain and no feeling in my feet my Dr. says it just has to take time and come back of course I have fatigue I also take care of my 93 year old Mother I have had no help only 1 brother he stops every moring and evening and goes to grocery store for me My question is my Dr. put me on Omacor and said that they have done research in Euorpe and that it is suppose to help neuropathy and pain I have been on it for 3 months has anyone else taken this?

    • Anonymous
      July 15, 2006 at 11:04 pm

      hi 2hot & welcome,

      it may/may not help. has it helped you w your pain? i’d suggest you up your neurontin by 300 mg/every other day. max is 5600 mg/day.


      take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 16, 2006 at 11:36 am

      🙂 I don’t think that it has, but both the gp & neuro don’t think that I need to up my neurotin. So I guess I just have to bear it. Thank you very much for your reply. I posted on the old forums.


    • Anonymous
      July 16, 2006 at 11:38 am

      [QUOTE=wv2hot4u]:) I don’t think that it has, but both the gp & neuro don’t think that I need to up my neurotin. So I guess I just have to bear it. Thank you very much for your reply. I posted on the old forums.

      Reflect upon your present Blessings. of which every man has many

    • Anonymous
      July 16, 2006 at 1:24 pm


      your docs are wrong. forget your omega-3 pill & up your neurontin & see if it helps you. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 16, 2006 at 1:35 pm

      Gene the only thing my ins will only pay for a 30 day supply of nurontin so if I up it I won’t have enough for the month

    • Anonymous
      July 16, 2006 at 4:18 pm

      Hi Carol,

      The insurance will pay for anything the doctor signs off on,that a person needs. So far, by your own words above, your GP and neuro have signed off on what they want, only. By your words, what they want to do for themselves, is experiment on you. If a drug approved by our FDA here is used, then you hear this same drug mentioned being experimented in Europe by your doctor, who knows good and well that if something did work, it would still be years away from getting approval from our FDA, then the radar should go up. It’s not about good or bad. It’s about choice. Here, take this drug, where the jury is still out in europe testing it’s effectiveness and safety, and to dispence it here, under our guidlines, the jury will still be out 10 years from now, on effectiveness and safety, and let’s see what happens. That’s one choice. Another choice is, I don’t want to go through a minimum of 3 months to a year, seeing and feeling if something is going to make a difference, then possably having you, doctor, try something else again. The symptons or residuals are here now, let’s deal with them now. You express pain as the residual that most dibilitates you. You are on neurontin for it, and it still presists, the logical step for the doctor was to advise you on upping your dosage. Then writing script for insurance refills at whatever quanity, and you could have possably gotten all the relief you needed by just that. When the doctor suggests another thing to try for the same problem, then my next question is why then, am I on this original stuff in the first place? Why do I need a second drug to fix the same problem? Will this one drug fix the problem? Stuff like that. Combos are used in medicine, but aren’t needed in this area. You have pain, neurontin subsides some, but not all of it, so you know it is effective. Right? So, how effective would more neurontin be? Sounds like your doctors aren’t going to give you that chance to see how effective. I always express to my doctors that I have one huge thing they don’t. One big advantage they don’t. A front row seat. I tell them to please never tell me, how I feel. I pay you doctor, for me to tell you, how I feel. Then you transfer my honest, truthful evaluation of how I am feeling, into solutions and pathways to healing and battling residuals. That’s another choice, which I made long ago, to tell them honestly, what I expect of them. Up front. First visit. By using this technique, within minutes of sitting across from a doc, I cleared the table of ego, title, bank account and all the BS people get so upset about, called bedside manner, right off his desk, and he/she now knows I’m dead serious about my disease and circumstances it put me into. That’s a small part in how I get doctors working for me in short order, instead of working for them, waiting 3 months till forever for relief. Also, how I speed up this disease that everyone says is so slow. What’s slow besides healing? Getting residuals taken care of in the mean time, to me, seems to be the time consumer. Had I had this darn pain reliever sooner, or had the dosage upped last office visit, I could have functioned months ago, at a much more comfortable level. I refused from the start, to not let GBS be harder on me then it has to, or should be. Nothing said, or what people choose to do, is right or wrong. Look, everyone, at your own past life experiances, then think honestly how many times you’ve heard the phrase “Gee, if you only asked…”, Gee, why didn’t you ask?…” Then shortly there after, problems and issues went away or were solved. I heard it enough to learn from it, so I do ask, and so far, from observing other like cases in person and from these forums and other places, I seem to get better insurance coverages, better doctor responces to my needs, under the very same two things you have. Without one emotional, knock-down, drag-out fight with anyone. Look at methods and approches to issues first, before going straight to right or wrong. All because I told them what I thought. All choice. Have your doctor write a prescription for his precieved pain that you have, have him take it and get back to you on if you are feeling any change in 3 months. Then ask for one that will help your real pain, you feel. I’ll bet you’ll get something going from that point forward.