New to Forum

    • Anonymous
      October 22, 2011 at 6:45 pm

      Dear Forum Members,

      I am a Newbie and this GBS stuff is very hard to understand.

      This is my first posting here on the forum. I am 63 years old and have been told by a doctor that I have an AIDP, possible GBS or CIDP according to the EMG he performed on Oct. 5, 2011. He recommends that I be seen by a Neurologist for a diagnosis and a treatment protocol. His report also states that he is

      “a little supicious……that we may not be looking at a single AIDP and that this may later develop into a chronic form or CIDP (hopefully not).”

      I am not sure what that means, does anyone else?

      The EMG also shows

      “moderate severe neuropathic disease in the distal greater than proximal gradient affecting lower greater than upper extremities with temporal dispersion proximally and very slowed conduction generally. This is most consistent with an acute inflammatory demyelinating polyradiculoneuropathy (aka Guillain-Barre’ Syndrome).”

      At its peak, the disease showed itself as numbness in my lips, tongue and messed up taste buds (right side only), as well as parastesia (sp?) in both hands and legs (mid-calf down to toes). All of this was preceeded by a bacterial skin infection that was undiagnosed but treated with a 10 day course of Keflex. I made 2 trips to our local Immediate Care and 3 trips to the E.R. and no one came close to a diagnosis.

      My AIDP first showed itself a month earlier on or about Sept. 5 and the symptoms peaked a little less than 4 weeks later. The first 3 weeks were pretty scary and quite painful, but by weeks 4-5 I started feeling better and knee reflexes began to return on October 13, 2011.

      As of today, Oct. 22, I have regained most of the feelings in my hands and fingers, my taste buds are normal and my feet are just a bit numb and tingly from my toes back to the middle of my foot.

      I cannot get an appointment with the local neurologist here in So. Oregon any earlier than November 30, 2011. My Primary Care Physician says that he is the best we have and is not too concerned about the wait, but I am. It has been more than 6+ weeks since my first symptoms appeared. If I wait until then, it will be more than 3 months since onset of symptoms and still no diagnosis or a treatment protocol.

      Also, I have been to this neurologist before and he gave me a prescription for tremors when I went to see him because of my lower back pain, so I am not too impressed with this neurologist. He has no nurse on staff, just a receptionist who could not tell me if the doctor was even qualified to treat GBS/CIDP.

      So, while I am waiting to get into the local neurologist, I have applied to be seen by the Neurology Dept. at UCLA which is listed as a “Center of Excellence” at the GBS/CIDP web site.

      Well, that’s my short version, thanks for listening. Any comments or suggestions are always appreciated. Such as, am I missing or overlooking something? I have read a lot of stuff on the forum, but I cannot stay at it for too long due to other unrelated health issues.

      Thanks again.

      John (aka: Rubber Legs)

    • Anonymous
      October 24, 2011 at 2:37 pm


      Keep our world posted with your results. They will be positive.


    • Anonymous
      October 24, 2011 at 7:59 pm

      Hi GH-CIDP and Mackie,

      Thank you for the responses……”the best we have” according to my PCP it means he is the most senior and hopefully more experienced. When I explained to my Dr how this neurologist seemed “out of it” at our last visit, he admitted that the guy would get a “F” for bedside manner and social skills, but that he was “the best we have…”. Even so, it will be about 6 more weeks before I can get to see him. I do not have a lot of confidence with this guy. So, while I am waiting, I am looking for another option.

      And, as for going to UCLA, I have family in the L.A. area and we live in a wooded part of So. Oregon. We are limited in the number of specialists locally, so I thought that trying to get into one of the “Centers of Excellence” for my initial diagnosis would be a better way to go.


    • Anonymous
      October 25, 2011 at 12:24 pm

      Hi John,

      Unfortunately, I don’t have any advice regarding the results you’ve received thus far, however, I wanted to welcome you to the forum.

      Take care,


    • Anonymous
      October 26, 2011 at 12:10 am

      Hi John,

      I am being seen at UCLA on Nov. 9th, my Neuro Doc is Dr. Perrin Plenninger, My neuro here in Orange Couny Calif cannot figure out exactly what is going on with me, I have been sick for several months, I am worried too about what damage is being done to my nerves, I am numb from head to toe. I have done a lot of research on Dr. plenninger and asked people in the UCLA neurology dept. Who they would see, check this Dotor out online. Good luck with your appt. At UCLA, let me know what they say. Blessings, Jan

    • Anonymous
      October 27, 2011 at 8:52 am

      Hello and welcome John.

      One of the proplems is the many variants of GBS. Then the many different types of CIDP. Nearly everyone that gets GBS will at some time get an EMG (electromyogram), and a NCV (nerve conduction velocity) test, and many neurologists (usually the better ones) will order/give an F-wave test. The doctors will use these tests and the patients clinical history to make a diagnosis, relying on the test probably more than 70%.

      I agree there is not enough research on GBS/CIDP, but what research is available, and what is known about these diseases just aren’t getting out to the doctors. One of the biggest problems today is that most GP’s, Emergency doctors, and many neurologist just do not know the symptoms, and in many cases, the treatments for GBS.

      I don’t want to make this long, but I think it’s important that we all understand what the EMG, NCV, and F-wave test are and how they work:

      An EMG (electromyogram) is usually performed when patients have unexplained muscle weakness. The EMG helps to distinguish between muscle conditions in which the problem begins in the muscle and muscle weakness due to nerve disorders. The EMG is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity. EMGs can be used to detect abnormal electrical activity of muscles that can occur in many diseases and conditions, including peripheral nerve damage (damage to nerves in the arms and legs), inflammation of muscles, muscular dystrophy, pinched nerves, etc. EMGs can also be used to determine the level of nerve irritation or injury.

      A NCV (nerve conduction velocity) test is normally done at the same time as an EMG. With the NCV test, the nerve is electrically stimulated while a second electrode detects the electrical impulse ‘down-stream’ from the first. This is usually done with surface patch electrodes that are placed on the skin over the nerve at various locations. One electrode stimulates the nerve with a very mild electrical impulse. The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the speed of impulse transmission (nerve conduction velocity). A decreased speed of transmission indicates nerve disease. The NCV test can be used to detect true nerve disorders or conditions that indicate muscles are affected by nerve injury.

      An F-wave is the second of two voltage changes (potential differences) observed after electrical stimulation is applied to the skin surface above the nerve away from the spinal cord (distal region). F-waves are used to measure nerve conduction velocity, and are useful for evaluating conduction problems in the group of nerves near the spinal cord (proximal region of nerves). In a typical F-wave study, a strong electrical stimulus is applied to the skin surface above the distal portion of a nerve, away from the spinal cord, so that the impulse travels both distally (toward the muscle fiber) and proximally (back to the motor neurons of the spinal cord) — also known as orthodromic and antidromic, respectively. When the orthodromic stimulus (or forward impulse) reaches the muscle fiber, it elicits (causes) a strong M wave that indicates muscle contraction. When the antidromic stimulus (return impulse) reaches the motor neuron cell bodies, the impulse is reflected and travels back down the nerve towards the muscle. This reflected stimulus evokes the second, weaker F-wave when it reaches the muscle. Axonal damage or dysfunction generally results in loss of nerve or muscle potential amplitude; whereas, demyelination leads to prolongation of conduction time. If the remyelination process occurs properly, then electrical impulses with proper nerve conduction and velocity will be seen with the EMG/NCV and F-wave tests.

      Regards to all.


    • Anonymous
      October 30, 2011 at 12:49 pm

      Welcome to our forum, John! I know we all sympathize with you as we have been there and as you may have read, we are still there. Jethro is very knowlegable and I hope his information helps. While waiting for a doctor please remember to get plenty of rest and then some!

    • Anonymous
      November 1, 2011 at 9:45 pm

      [QUOTE=Rubber Legs]Hi GH-CIDP and Mackie,

      Thank you for the responses……”the best we have” according to my PCP it means he is the most senior and hopefully more experienced. When I explained to my Dr how this neurologist seemed “out of it” at our last visit, he admitted that the guy would get a “F” for bedside manner and social skills, but that he was “the best we have…”. Even so, it will be about 6 more weeks before I can get to see him. I do not have a lot of confidence with this guy. So, while I am waiting, I am looking for another option.

      And, as for going to UCLA, I have family in the L.A. area and we live in a wooded part of So. Oregon. We are limited in the number of specialists locally, so I thought that trying to get into one of the “Centers of Excellence” for my initial diagnosis would be a better way to go.


      So go see your relatives, go to the ER (UCLA is a big hospital with doctors offices on one side and the ER and inpatient services on the other side, right???) and when the doctor says he wants a neurologist consult ask if they can get you one from the group that the neurologist works from and give them his name. 9 times out of 10 they send the one who has the best knowledge of the symptoms being described by the ER doc. Then you get seen ALOT QUICKER…… Sneeky but I have done it and it works, even to see my own nuero whom I love and recommend to anyone and everyone…….

      I just hope you get this figured out really quick. The longer without treatment the more damage done and the longer the recovery…..


    • Anonymous
      November 1, 2011 at 9:55 pm

      [QUOTE=GH-CIDP]I’m not sure what that means, either. When a peripheral neuropathy develops quickly, it may be classified as GBS, then later reclassified as CIDP, as was the case with me. It didn’t “develop into” CIDP, that’s what it was all along.

      Don’t worry yet about what a General Practitioner is calling it. You need to see a neurologist promptly!

      Does “the best we have” mean the best in a small town or the best in Medford? There are certainly neurologists familiar with GBS (and related conditions) in Portland, and I expect there would be in Eugene as well.[/QUOTE]

      I had full blown GBS 2 times and then years after my recovery I noticed small things that were not right with my body. With a good doctor and vigilance on my part, and many baseline tests later, that is when I was diagnosed with CIDP, so with some people it can actually “develope into” CIDP. I wish it wasn’t me:cool: I have already been thru enough:eek:

    • Anonymous
      November 3, 2011 at 3:29 pm

      Hi To All

      Thank you for the “welcomes and blessings” as well as the very helpful information regarding the EMG tests. It helps me to better understand some of my EMG report. Jethro, I must agree with you about the lack of information regarding GBS/CIDP getting to the medical front-line. Too much time wasted in trying to get our doctors up to speed. Jan (liftyourhands7) is a very good example….where she says “My neuro here in Orange Couny Calif cannot figure out exactly what is going on with me, I have been sick for several months, I am worried too about what damage is being done to my nerves, I am numb from head to toe.”

      I do intend to send a short note to at least one of the doctors who I know would like to see just how close he came to diagnosing one of those “rare diseases” He was just too early in the process to see the whole picture. Most of the other doctors looked at me as a “drug seeker” due to medical history and medicine onboard at the E.R. visits. It was not their fault, in that I am a chronic pain patient and take a high dose of a narcotic pain med that affects my breathing. So, they all wanted to send me back to primary care physician when it was he who sent me to the E.R. Well, that’s enough of that for now.

      Jan, I am glad to know that you are finally on your way to getting the help you need. November 9 will be here before we know it. Also, I did look into Dr. Plenninger and she looks like she has the background to deal with us. Good, very good. As I understand, they have received my referral to the Neuromuscular Clinic at UCLA and they will consider my case. Within 10 days or so I will hear if I have been accepted. I do not know if I will get an opportunity to choose any particular physician, we shall see.

      Yes Chrissy, I am learning about rest. My wife and I took our granddaughter to the pumpkin patch last Saturday and I could not get to church on Sunday. After being on my back for 2 months I should have thought of my fibro as well as inactivity but I felt good that Sat. morning!

      So, Sunday and Monday, I rested.

      Angela, thanks for another way to approach the UCLA issue. Tomorrow, we will be talking with the Neuro Clinic at UCLA and hopefully getting our appointment set up. But, I will keep your suggestion on file if that fails.

      Again, thanks to all for the responses. John

    • Anonymous
      November 3, 2011 at 5:01 pm


      Do you need a referral from a neurologist to get an appt. at UCLA Neuromuscular Clinic? or can you just make one yourself? How long of a wait was it? I am thinking of getting a 3rd opinion of my treatments. Thx

    • Anonymous
      November 12, 2011 at 12:13 am


      Do you need a referral from a neurologist to get an appt. at UCLA Neuromuscular Clinic? or can you just make one yourself? How long of a wait was it? I am thinking of getting a 3rd opinion of my treatments. Thx[/quote]

      Dear exosurf,
      After a few misses, I ended up going to this web site [U][COLOR=#800080][/COLOR][/U] .

      First we had to get an ID# by calling the patient pre-registration coordinator at 1 (800) 825-2631. This patient registration number will follow you for all future dealings with UCLA and must be included on everything you send to them. I then had my doctor fax his referral and my medical records (under my UCLA [I]ID#)[/I] to 1 (310) 794-7491. After getting registered, I called the clinic at 1 (310) 794-1195. The whole process took less than 2 weeks with most time consumed while the Head of the Clinic, Dr. Perry Shieh MD, who reviewed my case and then assigned me to a doctor. I will be seeing Dr. Pleninger, who is the same doctor that Jan (liftyourhands7) mentioned in her post above.

      Again, all of this information can be found the web address above. I hope it helps.

New to Forum

    • Anonymous
      March 19, 2010 at 3:28 pm

      Hi, my name is Laura and I was diagnosed with GPS in December. I have read so much about GBS and reviewed past forum topics. I have not seen or heard anyone having had GBS like me. It seems as if I have a mild case. (not that I am complaining, I thank God everyday).

      My neurologist is sure it is GBS. All tests point to Gbs, 3 NCV/EMG’s (by 2 different neurologists), spinal tap, symptoms etc.

      When diagnosed I was unable to lift my arm higher than my shoulder. My legs were very heavey when I walked and I lost strength in my fingers. I was put in the hospital and given IVIG almost immediately for the five days. After 2 days, I was able to move my arm and by the 6th day I left the hospital and felt great. Like it never had happened.

      3 weeks later (January) I was put in again for another 5 days, because this time, I was have double vision and my right eye ball was all the way on to right side that you couldn’t see the white of my eye on the right. On the 5th day, it made its way back and my eyes are fine today.

      3 weeks later, not presenting any symtoms, I went in as an out patient for one infusion of IVIG.

      We were going to wait 4 weeks for the next infusion however, 4 days before the 3rd week I started feeling the symptoms of heavy legs, foot drop and weakness in my fingers.

      So on the 3rd week from prior infusion I went back in as an out patient for another infusion (8 hours drip). (That was Monday night into Tuesday morning). Tuesday I went home, took a shower and went to work, feeling a little weak in the fingers and leg but better.

      Today is Friday and I feel good. I am able to walk on my heals, open the black paper clip clamps, pant hangers. These are the things I do on a daily basis to judge how I am feeling and to determine if I am getting it back.

      With all that I have read, I am not the typical patient. It scares me to think that it may come back as severe as the typical cases that I read about.

      Has anyone had this experience, or know of someone with such a mild case? Or did I catch it fast enough and the IVIG is working for me.

      My doctor plans on giving me another infusion in 2 week intervals and go from there.

      Yesterday I went to my Neuro Optomologist who gave me a clean bill of health with my eyes.

      Anyway, looking forward to learning more about this.

    • Anonymous
      March 19, 2010 at 8:07 pm

      Hi Laura: Have you asked your doctor about CIDP? Your symptoms are unusual but then we all know everything about GBS is unusual. However, IVIG normally only helps GBS during the critical period which usually lasts only a few weeks. The fact that you continue to have IVIG over several months and that it helps you is very unusual for GBS. It isn’t impossible of course, but if it was me I would ask your doctor for clarification of his treatment and why he thinks IVIG is working over such a long period and why, for that matter, you keep having relapses. Jeff

    • Anonymous
      March 19, 2010 at 8:13 pm

      Hi Laura,

      Welcome to the forums. There are a couple different forms of GBS but I’m not familiar with the symptoms. Your case does appear to be rather unique for a GBS patient. My paralysis/weakness started with my feet and legs and ascended. I didn’t receive plasmapharesis until at least a week or so after the initial paralysis. Perhaps they caught yours early enough with the IVIG, which is certainly a blessing.

      I’m happy to read that you’re rebounding quite well. 🙂

      Take care,


    • March 19, 2010 at 8:16 pm

      I concur with Jeff, it sounds more like cidp. You get ivig (relapse) you feel better (remitt) If it were gbs, you would not have a continual up and down with a positive response to ivig every time. With gbs, ivig is a one time thing and then you slowly repair. It is not a back and forth helped with ivig. It would probably be a good idea to talk with your doc about getting you on a regular schedule of ivig to avoid the relapses. Each time you relapse a new demylienation takes place and more damage occurs which you may or may not get back. Typically people start with 4-6 week intervals and if needed, closer together. Some right off the bat need them closer. Those who do not respond to ivig after trying a few rounds move on to combinations of maybe steroids and ivig or pp or imunosuppressants. There are many options to fit your situation. You just have to work with your doc to find out what suits your needs best. I would definately discuss the possibility of cidp and a more steady treatment plan. Keep us posted.

    • Anonymous
      March 21, 2010 at 1:05 pm

      Thanks for your response. I looked up CIDP and it does seem to fit me better than GBS. I go back to the doctor this week and I will discuss it with her.

      Although, Tuesday when I saw her after my last treatment, she did mention I probably should have the IVIG every 2 weeks and that I should go to Columbia Hospital to get another opinion, just to be sure.

      The nurse at the hospital did tell me that my doctor placed a call to Columbia to speak to someone there. I feel confident that my doctor is doing the best for me. that she doesn’t think it is beneath her to reach out to other doctors to get the best care for me. She listens when I speak and keeps me in the loop.

    • March 21, 2010 at 2:12 pm

      I agree, your doc is looking out for you by conferencing with other docs. An open minded caring doc is so important. Between your reading and looking out for yourself and her willingness to seek info from others you should be in good hands. The fact that she suggests every two weeks is encouraging. Keep us posted.

    • Anonymous
      March 22, 2010 at 10:41 am


      I too have a “mild” case of GBS or possible CIDP. You can look at my story under the Vaccine section. I have all normal tests, (no spinal tap though) and thus, did not receive any IVIG. Count your lucky stars that you have a good doctor who gave you this. I had a major struggle with doctors and kept asking to be “treated.” I am still searching for answers today. Good luck!

new to forum

    • Anonymous
      May 31, 2008 at 2:31 pm


      i have had gbs for 20 months now. i was wondering if anyone with gbs has had problems with there proprioception (not knowing where there body is within its space).and if anyoneone has had muscle spasms and muscle contractions.i was away from home with this disease for 11 1/2 months in hospitals rehab center and a nursing home. i am only 40, i was 38 when i got sick. i am still recooperating and still need assistance with things.

    • Anonymous
      May 31, 2008 at 3:13 pm

      My grandson is 15 yo and has CIDP. He has had alot of issues with proproception. I think this is very common due to feedback to the brain from the damaged nerves. He is improving in this area and has had an improvement in his balance. We purchased nite lites to make sure he was able to maintain his visual feedback system, this improved his ablitiy to get around at night if he needed to. Our vision also gives us feedback to were our body is in space. Welcome to the forum. I think you will find alot of positive feedback here.

    • Anonymous
      May 31, 2008 at 3:37 pm

      I still struggle a little with this symptom… I like to call it vertigo, even though I guess it isn’t… Mine comes and goes with weakness, fatigue, demy/remylination… I practice a few balance things to counteract this stuff.. exercise I do is high stepping, heel toe walking, I use a balance disc, closing my eyes standing on one leg (with partner).. I’ve found this has really improved balance.. I think you will find also as you develop core strength, and numbness subsides your balance will improve…take care deanop

    • Anonymous
      June 1, 2008 at 12:03 am


      This has been one of my most challenging issues! I have CIDP, not GBS – and I have had poor balance and inability to find myself in space for a number of years. I started to do Pilates to assist in my core strength abuot 2 years ago; this has REALLY helped with my balance.

      The other thing is using my eyes alot more; not relying on my brain or perception to try and do things that we tend to think of as automatic – e.g. reaching behind for something that you know is there, and missing, or dropping it.

      Walking is still interesting, even down city streets; I tend to trip and fall in the most embarrassing places! Uneven ground – e.g. in the country, etc. is quite difficult!

      Take care – the exercises that Deanop recommends would be really helpful.


    • Anonymous
      June 1, 2008 at 12:39 am

      I also have CIDP, came down with quite a severe case back in the spring of 2002. I remember having no idea where any of my limbs were when my eyes were closed; of course, at that time I had lost sensory feeling below the neck as well. As the feeling came back, so did the proprioception issues. But I still suffer from muscle cramps & spasms, seeming to be the worst in my thighs. My hands also lock up on me still, I think they call it “trigger finger?” Funny, how rarely I even think of these things anymore, as times goes on, one tends to adjust to the “new me,” as I have come to call it. You mean everyone doesn’t have their thighs bouncing around like crazy when they go to bed at night? I do find a tsp. of mustard does help when it gets too bad, & then there’s always, rest, rest, & more rest…

    • Anonymous
      June 1, 2008 at 12:38 pm

      i was going to pt and we would stand on a mat with my eyes closed and as i say i would wobble and sway like someone on a weekly drunk!!! i only go over to the pt to continue working on a few things but the theripist doesn’t want me to use the wobble board or balance on mat with eyes shut by my self. because he said i was strong and could not justify anymore therapy to hmo state medicaid program i was on because he said until some of the feeling comes back and the proprioception will get better theres not a lot pt can do to make that come any quicker. i had a severe case of gbs my neurologist thought i would never get out of the nursing home.i showed them!! debs could you give me some info on pilotes? i too have weak core strenght its better than it was but not100%.

New to forum

    • Anonymous
      April 25, 2008 at 3:27 pm

      Hello! I’ve been reading for a few days and now want to become a member of this informative group. I had tingling and pain in my fingertips and toes and went to the dr. for my monthly B12 shot. Doc said I was 10 days to early for that, but while I’m here get the flu shot!!! That was Oct 12, 2007. By Oct. 15 I was in hospital, in a coma and on ventilator. I spent 36 days in bed with my feet never touching the floor. I was transferred to rehad center for 11 days to learn how to walk and do everything else I need to do for myself. I was 56 — turned 57 in January. It was by the Grace of God that when I arrived in ER there was a specialist there who took one look and said – I want to do a spinal tap – she may have GBS. There was no waiting around – no diagnosis by process of elimination – he hit it right on the head. Afte 5 1/2 months I am back to my office job and driving my car. I went thru the 3 months of double vision, etc. When I read your posts I think — my God — I am the same way………..I am blessed with a husband and family who read everything they could get ahold of about GBS while I laid in a coma. They watch me like a hawk. My co-workers are wonderful. On days when I’m too tired to walk over to the cafeteria for lunch, one sweetheart co-worker goes over and carries my tray to my desk. This is a life altering journey. One thing for sure: I don’t sweat the small stuff. Thank you for giving me a place to learn more, and tell you about my day!!:)

    • Anonymous
      April 25, 2008 at 3:53 pm

      Welcome to the family!! This is the best place to get suppport and info. My story is very similar to yours only my bout with GBS was not caused by a flu shot but I believe I may have had food poisoning. Anyway, you can ask any of us questions and we will be more than happy to answer. There are so many people on this web site with a wealth of info!

      Look forward to seeing more posts from you.

    • Anonymous
      April 26, 2008 at 7:05 am

      Welcome Victoria, so glad you joined. thank you for sharing your story with us!

    • Anonymous
      April 27, 2008 at 8:49 pm

      Welcome to our family Victoria, it’s nice to meet you.


    • Anonymous
      April 28, 2008 at 2:28 am

      welcome to the family…………just go on reading the individual stories and get the info that helps u a little………….

      Sridhara Reddy.Ch

    • Anonymous
      April 28, 2008 at 6:29 pm

      Hi Victoria!:)

    • Anonymous
      April 30, 2008 at 12:59 pm

      Welcome and hi.


    • Anonymous
      May 1, 2008 at 3:08 am

      You are so right about this being a life altering journey-in many good ways and in some bad ones. I, too, have been touched by people that offer to help. Something like this can renew your belief in the goodness of people–not from pity, but from just wanting to help. I bet your family continues to be supportive and careful with you. Sometimes I get really flustrated with what I cannot do now and the impact this disease has had on my life, but I try to remember this side as well. Having been really independent for so long, I would not know how much people want to help if not for this illness. A little sweet lemonade from the lemons.

    • Anonymous
      May 1, 2008 at 1:59 pm

      Hi Victoria, Welcome to The Family. 🙂

    • Anonymous
      May 2, 2008 at 11:26 am


      Hello and welcome.

      Sounds like you have a wonderful support group, both at home and work to help you through this.

      I know in my experiences that my support group (wife, extended family, coworkers) REALLY helped me through all of this. Without them I would not be where I am in recovery today.

      There are many people here that will listen and offer great encouragement.

      Again, welcome.

New to forum

    • Anonymous
      April 17, 2008 at 1:45 pm

      This is my first post, so I hope I’m doing it right. I was dx with GBS on Nov. 3rd, 2007. My wife and I were on a 7 day cruise to the eastern Caribbean when I started to notice my toes and fingers start to tingle on about the 5th day of the cruise. I didn’t pay much attention to this until the next day, when I started to experience some pain with this. The ship’s Doctor had no idea what was going on, and gave me some pain pills. Fortunately we were scheduled to dock the next morning, and the ship made arrangements for me to be transported to Cape Canavarel Hospital which was near our port. Also lucky for me, the doctors there quickly diagnosed my condition and immediately started treatment. By this time, my condition had worsened. I went into a coma and was placed on life support systems. To make a long story shorter, thanks to great care and good doctors, my condition improved enough so I could be flown home, and continue treatment at local hospitals. After 99 days in the hospital, I finally went home. I still go 3 times a week for outpatient therapy. I have made great progress and have stopped using my wheel chair. I use my walker now, and can actually take a few steps alone. As most of you know, this has been a long hard battle, and I’ve still got a long way to go. My feet and fingers are still numb, but seem to be improving. I do have a question. Has anyone been told that their GBS could have been caused by a reaction to a flu vaccine? I had a flu shot 10 days before I got sick. Doctors that I have asked this, said this is a definite possibility. Thank ya’ll for letting me join you!

    • April 17, 2008 at 1:58 pm

      Welcome to the family and forum. I am glad ya got diagnosed so fast and were treated. You will find a lot of friendly people here and tons of information.
      GBS has been linked to flu vaccines. There are quite a few members that got hit after a flu shot. I have never had one, and never will. In fact, we are advised not to ever take another one after having GBS.

    • Anonymous
      April 17, 2008 at 4:39 pm

      Welcome – and I will definately NOT be letting my hubby read your story as it will be another excuse as to why we should NOT take a cruise;) . Yes – the flu shot is a real stinker – if you read the back posts you will see a number of people who were dx’d GBS after receiving the shot. I, for one, will never get another – although I am sure that it was not the case with me. Take it easy – your body just has to s-l-o-w-l-y heal and there is no way to rush it. Keep your self informed, and in touch with all of us.

      GBS-MFv 1993 and 2004

    • Anonymous
      April 17, 2008 at 9:08 pm

      Hi Charon.
      I am so happy you are on the road to recovery. YES the flu shot gave me GBS in Nov of 06. I was blessed and mine was only in my legs and feet. I went from a wheelchair to a walker and cane and now walk fine. PLEASE tell everyone you can about the dangers of the flu shot. also it does not protect you from the flu for the yr you take it. it is for last yrs flu.
      Also be very very careful with other shots as the Tetnis, Nenmonia, and most immune shots where chicken eggs are involved.
      You will heal but it will be slow and listen to your body and rest,rest,rest. your healing will be slow and every morning look for improvement. and work with your therpist. next you will be on a cane then nothing. May Gods blessings be with you and your loveones. You will find that we know more about GBS than 60% of the doctors. ( Steve)

    • Anonymous
      April 18, 2008 at 9:56 am

      Thanks to everyone who responded to my first post. You really make me feel welcome! I can see now, that with your support and God’s help, I’m going to beat this monster.

    • Anonymous
      April 18, 2008 at 12:32 pm

      Hi and welcome Charon,

      What a pity your wonderful cruise ended with such a low point! Did you still experience some pain at at the moment, and what hospital were you in? Well done on what seems to be a positive outlook. As you said, its a very hard battle and when things get bad, we are all here to offer support.

    • Anonymous
      April 18, 2008 at 6:11 pm

      Hi: Yeah, 10 days after flu shot, I was getting numb, and weaker,,,they iniatially treated me for lymmes disease…By about 15 days after flu and tetanus shot, I was pretty much paralyzed, and dx with gbs, in hospital given ivig and been battling ever since, but getting better…..deanop

    • Anonymous
      April 19, 2008 at 11:25 am

      Thanks for your response and concern! About the only pain I still have is in my feet when I use my walker. My feet stay swollen during the day but go down somewhat during the night. My hands remain numb, but I still have limited use of them. I was transported from the ship to Cape Canaveral Hospital where I received wonderful care and treatment.

    • Anonymous
      April 20, 2008 at 8:05 pm

      Hi, Charon! Welcome to a great group of folks. I had the classic GBS onset Dec. 6, 2007. Once I was diagnosed and hospitalized, the neurologists quizzed me about what instigated GBS….any illness or vaccines in the prior 2 weeks? Sure enough, I’d had a flu shot approx. 12 days before the onset. Mine was considered a “mild” case, since I was not on a ventilator and didn’t completely lose reflexes in my knees. I’m still not back to normal but am improving a little at a time.

      I’ve been told that if a person contracts GBS within 6 weeks of getting a flu shot, that person can never get another one. I wouldn’t necessarily discourage anyone from getting a flu shot but folks should be warned that this can happen as a result of one. Now, I’m wary of any and all vaccines. I’m a nurse and must get yearly TB tests….I refused until the neuro got back with me saying it was okay.

      I’m glad to hear you got proper diagnosis and treatment quickly. It sounds as if you are progressing well. I hope you get better every day…be encouraged and hopeful. We’re all rooting for you!


    • Anonymous
      April 20, 2008 at 10:15 pm

      Hi Charon, Welcome to The Family. Feel free to ask any questions or just vent when you need to.

    • Anonymous
      April 22, 2008 at 10:34 am


      Welcome to the GBS-CIDP forum. I’m sure that you have already discovered the warm encouragement and support that is here.

      I had a tough case of Gbs in 1994 and another tough case (>60 days hospitalized) in 2007. With rest, patience, rest, rehab, rest, and patience 🙂 you’ll find that you are able to overcome this monster.

      Just yesterday, I walked over a mile, and even played soccer in my front yard with my kids…..nothing better than that.

      Hang in there. Someone is always here to chat, if you need to.

New to Forum

    • Anonymous
      January 7, 2008 at 12:50 am

      I was diagnosed with GBS on 12/14/07. The Neurologist confirmed the diagnosis with a lumbar punture showing elevated protein in the spinal fluid. IVIG treatment was started the next day. Although I suffered some side affects from IVIG, it halted the progression. I was sent to rehab on 12/21/07 and released on 1/2/08. I am now receiving physical therapy at home. My balance is weak, and I still have numbnesss in my hands and feet, but otherwise I can get around with a cane. I still have some weakness on the left side of my face. My strength is improving, but I’m easily fatigued. I’m thankful that it was caught early, and the symptoms did not progress as far as they have in some. Guess I got lucky.

    • Anonymous
      January 7, 2008 at 2:56 am

      Welcome to our “Family”. I am so delighted with your quick recovery. Just be sure you don’t over-do and set yourself back ~ it’s easy to do that! Would you mind telling us what part of the country you are from, and male/female? Thanks.

    • Anonymous
      January 7, 2008 at 10:55 am

      I’m a 45 year old Male from Woodbury, TN. Woodbury is 16 miles east of Murfreesboro, or 90 miles to the west of Chattanooga. I work as a computer systems engineer for a large book distributor.

    • Anonymous
      January 7, 2008 at 2:56 pm

      Glad you found us, it helps so much to be able to speak to others who are dealing with the same. As I’m sure you have read over and over again, please dont overdo it as this can have a negative result. Take your time on your road to recovery, even though this is incredably frustrating it is the best way to do things. What side effects did you have from the IVIG?

    • Anonymous
      January 7, 2008 at 4:33 pm

      [QUOTE=ali]Glad you found us, it helps so much to be able to speak to others who are dealing with the same. As I’m sure you have read over and over again, please dont overdo it as this can have a negative result. Take your time on your road to recovery, even though this is incredably frustrating it is the best way to do things. What side effects did you have from the IVIG?[/QUOTE]
      I experienced hot flashes, body aches, constipation, nausia, and vomiting. I had five treatments, and each took about 4-5 hours to complete. They wanted me to stay awake during treatment, but waited till the second shift started, so most nights treatment did not start till 10:00 which was a real bummer!

    • Anonymous
      January 7, 2008 at 11:25 pm

      Welcome to the forum! The folks here are so warm, friendly and knowledgeable. I am new also, dx’d with gbs on 12-12, no treatment as of yet. Congratulations on your progress. I hope it only gets better.

      You live in a beautiful part of the country. I was in TN for the first time last July. I’m in the salt grass prairie of coastal Texas so those hills in TN sure looked good to this flat-lander!


    • Anonymous
      January 8, 2008 at 6:39 am

      Wolf I had to laugh when I saw your post – they did my IVIg treatments at night too and I swear that kept me from getting better – I wasn’t getting any sleep in the hospital! When they finally switched to doing them in the daytime I saw an improvement the next day.

      Hey and I’m also from TN! Born and raised in the hills of east Tennessee, right down the street from the Clampetts before they moved to Beverly Hills.

      Welcome to the forum and glad to hear you have had a speedy recovery so far! Don’t over do it! Rest more than you think you need to as frequently you won’t know you’ve overdone it until the next day.

      Take care,


    • Anonymous
      January 9, 2008 at 4:07 am

      Plenty of people here with great advice. Read around the Forums and learn much.

    • Anonymous
      January 9, 2008 at 7:49 am

      Just curious what drs thought triggered your gbs..are you getting along without much pain… hope all is well..deanop

    • Anonymous
      January 9, 2008 at 6:12 pm

      [QUOTE=deanop]Just curious what drs thought triggered your gbs..are you getting along without much pain… hope all is well..deanop[/QUOTE]
      The doctors believe an upper respiratory infection I suffered two weeks prior was the culprit, however, I won’t dismiss the flu shot simply because that’s the first thing everybody that has examined me has asked.

    • Anonymous
      January 9, 2008 at 6:15 pm

      [QUOTE=mwolf38]The doctors believe an upper respiratory infection I suffered two weeks prior was the culprit, however, I won’t dismiss the flu shot simply because that’s the first thing everybody that has examined me has asked.[/QUOTE]
      No pain, but I find myself putting on an extra layer of clothing because I’m cold. I’ve always run warm, so this is new to me.

    • Anonymous
      January 10, 2008 at 12:42 am

      Funny you say you’ve been questioned about the flu shot you received. I had the opposite happen.

      I, too, had an upper respiratory infection (began on 12-4, GBS onset was 12-6, dx’d on the 12th) and had gotten a flu shot the week of Thanksgiving. The orig. neuro said GBS onset is usually a couple of weeks after an infection…not a couple of days like mine. I kept asking if it couldn’t have been from the flu shot but he was evasive about it. It was as if no one dared point a finger at the flu shot as the culprit.

      Oddly enough, all three of us nurses that got shots from the same vial got upper respiratory infections within 1-2 weeks of getting the shot.

      I hope you continue to do well!


    • Anonymous
      January 11, 2008 at 7:53 am

      I had a physical, flu shot, and tetanus shot on 10/15/07..I was perfectly healthy…by 10/25/07 couldn’t hardly walk, and by 11/01/07, i was in the hospital..They told me they didn’t think from flu tell me how this was just coincidence..deanop

    • Anonymous
      January 11, 2008 at 11:22 pm

      I never liked getting a flu shot…felt like I had a better chance of missing the flu on my own, especially after seeing so many folks get sick following the vaccine. But, working in healthcare, it’s practically mandatory to get a flu shot.

      The CDC says the flu is more common than GBS so it’s better to get the shot. That’s probably why the neuro md hesitated to blame the vaccine but he had a hard time explaining why my GBS onset was two days after the respiratory infection started.

      Hey deanop, aren’t you near Duluth? Just wondering. I used to live there in the 70’s. Got a good friend in Carlton / Wrenshall…Jay Cooke State Park. Beautiful place in the fall!

      Take care.

    • Anonymous
      January 12, 2008 at 8:50 am

      yes indeed, i’m from wrenshall…how did ya know? who do ya know? you can send private email if necessary…they say there are more neuromuscular problems per capita than anywhere in world..deanop

    • Anonymous
      January 12, 2008 at 2:27 pm

      You mentioned in one of your posts that you went to St. Mary’s in Duluth…that caught my eye since I lived there long years ago. I sent you a priv. message.

      I wonder if the cold has anything to do with the increased incidence of neuropathy? Are there more cases of GBS/CIDP in North America than South? Just curious.


New to forum

    • Anonymous
      August 9, 2007 at 11:36 am

      Hi all. I have been a longtime reader of this forum but new member. What a great network! I will make this brief. Ha! My process started 3 years ago. Sudden weakness, numbness in feet- mild GBS diagnosed after success with IVIG and NCV’s and MRI. Three months after “cured” floppy feet, pain, numbness– well you know all the symptoms! CIDP diagnosed. IVIG q month ever since. Fast forward to March 2007. Symptoms start again even with IVIG q month. IVIG started q 2 weeks 30 gms ever since. Lyrica upped to 150 mgs three times a day. Since the beginning, what I have that is different from most of you is pain in all my teeth, controlled with Lyrica, dental xrays are normal. No sinus problems. I have had times when the pain was too much to bear! I also have abnormally strong knee reflexes as found by neuro ( apt yesterday) which is normally found with CNS lesions. I have great faith in my neuro, he is well respected in the field. Yesterday, he said- well I am not helping you– I am going to send you to Emory U. to see the Peripheral nerve docs there. This takes a doc to doc call to get in. So I am waiting for him to call back. I will continue on the IVIG and Lyrica for now. My legs are very weak and wobally and I get incapacitating burning, tingling pain in my feet. What do you all think about my differences? Oh yes I have severe hearing loss in only one ear too.
      Thanks in advance for your support and ideas

    • Anonymous
      August 9, 2007 at 12:31 pm

      Hi Charliegirl. Welcome to the forum. The members are really supportive here. I also have CIDP — the onset was different, mine was very slow and showed a relapsing/remitting course. I’m getting IVIG once every 6 weeks now for the past year and it’s still working. But I’ve read other peoples’ posts that say it stopped working for them, so I guess it’s not unusual (although it’s my biggest worry!). I also have burning/tingling and numbness in my feet, but it’s bearable. I pretty much only wear Keds these days, even at work (if they don’t like my footwear, too bad!). Hearing about your teeth is interesting to me. I’ve always had sensitive teeth and have been using Sensodyne regularly for a while now, but a few weeks ago I had a routine exam/cleaning and one of the nerves flaired up — got even worse after my IVIG last Thurs. Usually these flares will calm down pretty quickly, but this one is bad and I couldn’t help but wonder if the intensity/duration is CIDP-related. Guess there’s no way to tell for sure. Incidentally, my biopsy surgery sites also get more sensitive after IVIG — I guess healing nerves work both ways.

      I hope the more frequent IVIGs help your weakness — I know how bad it can be (that was my main symptom). Or that your new doc has some ideas on how to effectively treat you so that you get stronger soon.

      Wishing you the best,
      Caryn 🙂

    • Anonymous
      August 13, 2007 at 1:33 pm

      Welcome cg and glad that you found us.


new to forum

    • Anonymous
      April 12, 2007 at 10:10 pm

      Hi, I am new to this forum and wanted to share my story. In 1989, when I was 18 years old, I came down with GBS. It started right after the new year, I began to notice that my little fingers and littlest toes were numb along with the underside of my whole body. Over a span of 3 weeks it progressed to all my fingers and toes. One day, my then boyfriend (now husband), noticed that I waddled when I walked, by that evening I “felt like something wasn’t right” and I wanted to go to the hospital. Six hours later the entire left side of my face was paralysed and I could not hold my bladder. The doctors were at a loss as to what they could do for even told me “Karen, you are dying and we don’t know why”. Talk about freaked out. They ran every test possible and no one had any clue as to what to do for me. I have no idea how long it took (in hours) but after consulting with a newly transfered doctor who had treated GBS before I was started on a steriod therapy and I stopped getting worse…the vent was next to my bed waiting if I so needed. Luckily I never had to be vented but I was totally paralysed, even my entire face. Over the next 2 weeks I received IV steriods and some PT but with no insurance or financial help I was released on Valentines day 1989, when I could pretty much care for myself and could take a step on my own. By July I could pretty much walk again, I could even walk up stairs. I have tons of residuals from my illness and I am guessing from the type of treatment I received (dont get me wrong, Im very greatful for them saving my life, they did they best they could) I have many breathing issues, fatigue, arthritis, weakness, no stamina, hot flashes-only at night though. I was recently in a car accident and now have Reflex Sympathetic Dystrophy in my right hand and arm. I am always cold and when I’m really cold it makes me ache all over more than any other time.

      Sorry, I know this was somewhat long but I’m really excited to have found this forum, I had no idea that there was this information out about GBS. I have gone for almost 16 years knowing almost nothing about the disease that almost took my life. Thank you for sharing and having me share my story.


    • Anonymous
      April 12, 2007 at 10:17 pm

      Welcome, Karen!!!

      We all keep learning more about GBS/CIDP. This is a great place to share and vent and get encouragement. Glad you found us!

      Best wishes,

    • Anonymous
      April 13, 2007 at 12:07 am

      Hi Karen,

      Welcome to the GBS/CIDP family. Sorry to hear you are having problems after the accident. It never ceases to amaze me how different GBS is for each person. Hope to here more from you in the future.

    • Anonymous
      April 13, 2007 at 7:52 am

      Hello Karen and welcome to our family. Sorry to hear your about your accident. Please keep coming back this is a great family and does help to have people to talk to hope to hear more from you. Dawn C.

    • Anonymous
      April 13, 2007 at 10:59 am

      Hello Karen and Welcome

      It is wonderful that you found the forum. I got GBS in 85 when i was 18, but after ‘recovery’ had minor residuals that I didnt attribute to GBS because I was told I had recovered. It was only after the last few years after quite a severe flare up, and now dealing with residuals that are worse, that I did some research and happened across this site. It is a wonderful place for information, questions and support.

    • Anonymous
      April 13, 2007 at 11:32 am

      Welcome Karen and glad you found us.


    • Anonymous
      April 13, 2007 at 2:14 pm

      Welcome Karen! Thanks for sharing your story. I look forward to getting to know you better 🙂

    • Anonymous
      April 13, 2007 at 5:05 pm

      Dear Karen:

      Welcome to our little family. I am glad you found us and shared your story. I hope you can find comfort in the fact that you are not alone and that you share many experiences that all of have also faced.


    • Anonymous
      April 19, 2007 at 3:57 pm

      Greetings Karen,

      As you can see, we are always happy to have a new member join our family. This is unfortunate that you have had GBS, but together here we keep our sanity. The medical community mostly does not agree or see that we have legitimate residual issues. So we fight together, sometimes we cry together, and we really love it when we can celebrate together. I am 10 years out and as someone here recently said, this illness makes most of us look so wonderful as everyone says “well, you look just fine” which is crap when we feel horible inside.

      Looking forward to hearing more from you!

    • Anonymous
      April 20, 2007 at 3:27 am

      Hi Karen,

      I am new here too. Sounds like a pretty tough go there at the beginning for you. I, like you, am hoping that having these great people here to talk to will help me feel less isolated and alone in this.


    • Anonymous
      April 20, 2007 at 8:32 am

      thank you to everyone for the wonderful welcoming. I really look forward to getting to know the regulars and meeting new friends. Everyone have a tremendous day today.


    • Anonymous
      April 20, 2007 at 10:20 pm

      Karen welcome. I to am new to this sight and never knew it existed. Already I feel better knowing that there are others that understand about gbs. I was only 11 when i came down with it. That was 35 years ago and no one knew what it was. I would like some feed back about symptoms that people have years later after gbs. I sometimes feel that doctors don’t understand how my body feels. I kinda had a relapse last fall and things haven’t been right ever since and I have been to many different doc. I wish there was someone who left from geisinger medical center that knew me back then. I never had any of this new kind of procedures all I had was the iron lung and alot of experimenting of all kinds. Has anyone out there ever had a relapse later in life that might want to talk or share some of the different things that could be happening to me. I was totally paralyzed from neck down. Thanks for letting me vent. Its truly a blessing to have found this site. deb

    • Anonymous
      April 21, 2007 at 1:16 am

      I to am so glad to have found a place like this.I was diagnose with gbs at 25. A year later I still know so little.

    • Anonymous
      April 21, 2007 at 1:40 am


      My common ‘mantra’ seems to be …… There are a number of us on the forum who suffer residuals decades after the onset of GBS. With me I was told I had ‘recovered’ so I just tried to ignore the fatigue, pain in feet and lack of stamina I had after I left hospital. was paralized and had a trach for 6 weeks. Fast forward to a few years back and I thought I was having another GBS attack (hadnt felt like this since the original onset). Since then I have been batteling rather badly with residuals. Weakness at times, SEVERE fatigue that is debilitating, burning and cramps in hands and feet when I do things – also limbs at times. Doctors werent interested, until I found an old doc of mine from a few years back and he at least is willing to listen. Emotionally it is very difficult, slurring words when Im tired, not being able to garden like I used to, even peeling potato’s, which isnt a favorite of mine, would be wonderful for me to achieve without pain. There are a few articles touching on the subject, the best being the following. Cut and past the URL as we cannot post links on the site.

    • Anonymous
      April 21, 2007 at 2:05 am


      Im sorry, I’m out of town at the moment and cant find the link. If you go to the “Main Forum” and look at “Aggressive Treatment/residual symptoms” you will find the article I was speaking about. Its very interesting, there are 2 cases at the bottom that expain the way you may possibly be feeling.

    • Anonymous
      April 22, 2007 at 7:34 pm

      welcome caren

New to Forum

    • Anonymous
      April 12, 2007 at 9:46 pm

      I’m glad I stumbled on to this web site and forum. I was diagnosed with GBS in 1980 and had a full recovery and then was diagnosed again Feb. 2006. Second time around with GBS is harder bouncing back. I have alot of facial weakness and left sided parasthesia. I’m glad to join the group…..Larry

    • Anonymous
      April 12, 2007 at 9:58 pm

      Welcome to the group

    • Anonymous
      April 12, 2007 at 10:02 pm

      Welcome Larry! Sorry you have had a relapse – what treatment are you getting? I’m rather new, CIDP dx 10/06, but this is a great place to come for answers/encouragement. I know there are a lot of folks here who can help you, just know that we all wish you the best. I grew up in Lauderdale – do you ever go to Ernie’s BBQ on Federal Hwy? It is THE best! Good luck and good health!

    • Anonymous
      April 12, 2007 at 11:45 pm

      Welcome Larry! We’re delighted to make you a part of this unique family 🙂

    • Anonymous
      April 13, 2007 at 12:15 am

      Hi Larry,

      Welcome to the GBS/CIDP Family. There is a lot of experience for GBS/CIDP here. I have found answers to question that helped me a lot. Hope you have the same experience.

    • Anonymous
      April 13, 2007 at 12:28 am

      [B]Welcome to the group Larry. I’m sorry to hear you had a 2nd bout with GBS. I hope that you start to bounce back soon.[/B]

    • Anonymous
      April 13, 2007 at 6:08 am

      Welcome Larry. This is the best family ever, hope you start to feel better soon. Best of luck .

    • Anonymous
      April 13, 2007 at 8:57 am

      Welcome to The Family Larry!!:)

    • Anonymous
      April 13, 2007 at 11:29 am

      Hi Larry and welcome to the family.