NCV & EMG “jargon” by Vasudeva Iyer, M.D. University of Louisville

    • Anonymous
      April 20, 2011 at 9:21 am

      I wanted to know what it meant when my latest testing results showed both CMAP & SNAP declined slightly. I found these definitions:

      [I]Glossary: NCV & EMG “jargon”

      Latency: Time interval between stimulus and the response; motor latency is usually measured to the onset of the CMAP and sensory latency to the peak of SNAP. Latency is measured in milliseconds. The same nerve may be stimulated distally and proximally and conduction time is designated as distal latency and proximal latency respectively.

      Amplitude: Size of the response, measured in millivolts (for motor) or microvolts (for sensory); the measurement may be from baseline to negative peak or peak to peak.

      CMAP: The term stands for compound muscle action potential; response recorded over the muscle, when its motor nerve is stimulated.

      SNAP: The term stands for sensory nerve action potential; response recorded over sensory nerve; the nerve may be stimulated distally with recoding electrode placed proximally (orthodromic) or vice versa (antidromic).

      Fibrillations: Biphsic waves of 200-500 uV detected by needle EMG; signifies denervation of muscle fibers

      Positive Waves: Monophasic positive waves, detected by needle EMG; signifies denervation

      Fasciculations: Biphsic or triphasic potentials of 0.5-5 mV detected by needle EMG; seen in chronic denervation of motor units.

      Motor unit potentials (MUP): Summated electric activity of several muscle fibers of one motor unit in the vicinity of the needle electrode; usually bi or triphasic, 0.5-5 mV. When 4 or more phases are present, the term polyphasic unit is used; denotes altered motor units from reinnervation or myopathic changes.

      Recruitment pattern: During volitional contrction motor units are recruited according to the force of contraction; thev rate of firing of each unit increases before more units are recruited and with full force individual units cannot be distinguished leading to full interference pattern.[/I]


      It’s a study of the hand. Still the info makes interesting reading.

    • Anonymous
      April 20, 2011 at 1:03 pm

      So, is the decline good or bad?

      Thanks for this. I have the results of three NCV and EMG studies done at Northwestern over 10 months — 2 pre-SCT and 1 post-SCT. I will see if your list of terms helps me to understand the changes.

      Do you know anything about F waves? This is something else they looked for in my NCV.


    • Anonymous
      April 20, 2011 at 6:30 pm

      Here is a great site on EMG and Nerve Conduction. I’ll think you’ll find lots of info. here. [url][/url]


    • Anonymous
      April 20, 2011 at 7:23 pm

      Sharon- what little I know about F-waves is that they shouldn’t be latent, at least not too much.

      However, to paraphrase others- the F-wave is apparently a ‘response’ to muscle stimulation that travels back up to the anterior horn cell. (yes, some people have what’s called anterior horn cell disease, ‘they’ accused me of it!)

      Then, a measurement is made to determine the latency, or time lag of the responding signal. This, apparently gives an overall conduction velocity between the muscle and the spine.

      The above from a little deeper within Laurel’s web site at-


      Oh, the answer to your 1st question is that overall, my emg/ncv results ‘were mostly unchanged.’ The actual CMAP & SNAP should be higher not lower. I believe the lower aspect of the results are reflected in the dramatic drop from 10lbs to 7lbs in my right hand grip strength that I experienced during the time I was on 3 days IVIG every three weeks. I’m back up to about 9lbs now.

      Laurel, thanks. You emg/ncv website will likely take days to read.

    • Anonymous
      May 15, 2012 at 10:36 pm

      You had a SCT at Northwestern? Could you email me sometime and tell me what made you try that? How it went? How are you now? I am getting to the end of stuff to try and am wondering about SCT. I am terrified tho, of getting something (infection) and not surviving. I would love to hear your story…

AFO’s and Winter Boots

    • Anonymous
      December 6, 2010 at 8:40 am

      Hi guys,

      Quick question regarding wearing AFO’s and winter boots. This is my first winter wearing an AFO and I’m almost positive I’ll need ankle boots. I’m also concerned about getting boots with fleece inside as I have a hinged AFO and wouldn’t want anything to get caught in the hinges.

      The type of boots I need would have to be something I could wear all day at work as changing into shoes would be a bit too much. Any suggestions would be greatly appreciated.

      Have a wonderful day!!

    • Anonymous
      December 12, 2010 at 7:00 pm

      Tina what a question and problem.I can not give an answer but perhaps you could check with the company that made your AFOs.We were able to order other shoes etc.We also have AFO check ups every 6 months and the company has helprd us with any questions we have.Good luck and i hope you find an answer.

    • Anonymous
      December 14, 2010 at 12:42 pm

      Thanks for the suggestion. 🙂 Unfortunately, the person I spoke with at the place that made my AFO was a bit confused by my question (yeah, I know…lol). :rolleyes: When things slow down a bit at work, I’ll call back and ask for an Orthotist.

      I appreciate your response and have a great day!!

    • Anonymous
      December 14, 2010 at 12:44 pm

      No easy answers. That’s probably why it took six days before anybody answered your plea for help.

      I’ve had AFOs since 1980, or so. There are many times that I simply don’t wear them.

      For example, when I go to Alaska to visit family I carry my AFOs in my backpack. When I go outside in the snow I walk around with my snow boots and without any AFOS. Maybe I’m lucky, I’m able to walk without them.

      When I’m sitting in the car, and especially, if I’m driving the car, I do not wear AFOs. I put them on when I get where I’m going.

      For other occasions I don’t mind changing. For me, you’ve given yourself a tough restriction in hoping not to change when you get to work.

      I’ve heard….I call it ‘somebody’ said, wear above the ankle lace up boots and then lace them up tightly. That way they tend to act as a kind of AFO.

      Alternatively, pick your favorite pair of boots, work with the AFO supplier as mentioned above, and get the type of brace that fits outside your boot. Trouble is, once they are built , you are stuck with them.

      Arrggh, there is another option. Get a smaller lighter, leaf spring style AFO, without hinges, and it might fit inside your boot without sticking to the lining. Refer to the attachment.

    • Anonymous
      December 15, 2010 at 8:57 am

      Hi Yuehan,

      I appreciate the time and suggestions, however, they really aren’t feasible for me. I hope you won’t feel my reply is negative, just felt I should give a bit more background info to explain my apprehension.

      I went without an AFO after I was diagnosed in 1991. Due to this, I caused quite a bit of unnecessary back and leg pain and damage by using the wrong muscles to walk. The AFO has helped tremendously and it’s rare that I need pain meds. Plus, I’m much more stable using the AFO, which is a plus during the winter.

      Unfortunately, switching from boots to the AFO isn’t possible as it’s a bit tricky to do at home; doing so at work would be a bit of a nightmare. I also have to walk at least 1/4 of a mile to get to my work space. Doing so sans the AFO is not something I’m comfortable with these days, especially when the floor is a bit slippery due to water, salt, etc.

      We changed insurers and they don’t cover AFO’s. To purchase one out of pocket at this time isn’t feasible or really necessary. In addition, the non hinged AFO in your attachment caused me to lose my balance more than not, which is one reason I went without for so many years. I shall press on wearing tennies (gym shoes) in the winter. Fortunately, the person I ride with is willing to do whatever necessary to avoid mounds of snow. If it’s too bad out, I shall take a snow day!! 😀

      Thanks again for your suggestions and have a wonderful day!!

    • Anonymous
      December 16, 2010 at 12:47 pm

      Ideas, like sunshine, are free to use or to avoid.

    • Anonymous
      December 16, 2010 at 1:13 pm


    • Anonymous
      December 16, 2010 at 8:48 pm

      I’m from Michigan also- about 2-3 hours north of you. Having same issues w/ my AFO’s. If u get any good answers- please let me know. Thanks.

    • Anonymous
      December 16, 2010 at 10:17 pm

      There use to be a thing called galoshes [water proof outer boots] that you worn over your shoes. We had them when I was a kid. I don’t know if there still is still such a thing. They weren’t very stylish, but they were practical. I’m not sure how they would work out for you. As I remember they were cumbersome. We don’t have a snow problem here in Florida, so I haven’t faced that issue yet. Sorry, I can’t give you any experiential advise. The galoshes ideas may prove impractical. If so, I apologize, but I thought I give it a shot.

    • Anonymous
      December 16, 2010 at 11:20 pm

      I certainly remember the galoshes. I’m not sure how warm they would be for the snow- but maybe could work w/ very warm socks. So far- it’s the best idea I’ve heard of. Thanks.

    • Anonymous
      December 17, 2010 at 10:46 am

      [QUOTE=jeanbell1]I’m from Michigan also- about 2-3 hours north of you. Having same issues w/ my AFO’s. If u get any good answers- please let me know. Thanks.[/QUOTE]

      Yikes!!! I’m sure you’re probably dealing with more snow. When I went shopping, it was very frustrating and inconvenient trying on boots. I needed assistance and one of my good friends took me; however, she was easily distracted by every doo dad and sparkly thing, which really made looking and trying on boots a bit of a pain; mentally and physically. I’ve pretty much resigned myself to wearing gym shoes this winter, however, I probably gave up a bit easily as I didn’t have a lot of patience.

      I laughed out loud as I typed the last few sentences. My friends are truly awesome, but when I’m focused on purchasing a particular item, I pretty much have no peripheral vision until that item is located. 😉

      Please keep me posted if you find a pair of boots that will work with the AFO’s and good luck!!

    • Anonymous
      December 17, 2010 at 10:50 am

      Oh my…I’d completely forgotten about galoshes!! I choose safety over style, so no worries there.:) I’ll check them out.

      Thanks for the info!!

Ten Medical Facilities Designated “Centers of Excellence”

    • Anonymous
      June 23, 2010 at 4:17 pm

      [B]Ten Medical Facilities Designated “Centers of Excellence” for the diagnosis and management of inflammatory neuropathy by the GBS/CIDP Foundation International[/B]

      (Narberth, PA.) The GBS/CIDP Foundation International today announced the designation of ten initial “Centers of Excellence” for the diagnosis and treatment of Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and variants.

      The centers will form a network of healthcare facilities to provide expert diagnosis and management of inflammatory neuropathies for patients who are unable to consult with medical experts in the field in their own communities.

      “This is the first round of designations,” said Patricia A. Bryant, executive director of the foundation. “We will be accepting and evaluating applications from other interested institutions in the future in our efforts to better serve patients with these debilitating diseases,” she said.

      The designated facilities are:

      California Pacific Medical Center–San Francisco, California
      Heinrich-Heine University Department of Neurology,–Duesseldorf, Germany
      Phoenix Neurological Associates/Banner Good Samaritan Medical Center,–Phoenix, Arizona
      St. Elizabeth’s Medical Center–Boston, Massachusetts
      The Johns Hopkins University School of Medicine–Baltimore, Maryland
      King’s College Hospital–London, United Kingdom
      University of Kansas Medical Center–Kansas City, Kansas
      The University of California, Los Angeles Dept. of Neurology–Los Angeles, California
      University of Texas Health Science Center–Houston, Texas
      Wayne State University School of Medicine–Detroit Medical Center, Michigan

      For additional information on these centers please visit our website at

Goehring diagnosed with Guillain-Barré Syndrome

    • Anonymous
      October 27, 2009 at 11:31 pm

      North Dakota Agriculture Commissioner Doug Goehring is being treated in a Bismarck hospital for a recurrence of Guillain-Barré Syndrome (GBS) which he first experienced 18 years ago.

      Wow, unusual to get GBS again after that long of time.

    • Anonymous
      October 28, 2009 at 8:52 am

      Hi Scott,

      I agree….that’s pretty scary. A reoccurrence was always in the back of my mind; however, I passed the 18 year mark last month and “assumed” I was home free. Not that I’m going to panic. 😉

      Thanks for sharing and take care,


    • Anonymous
      November 18, 2009 at 6:39 pm

      I wonder if he had a flu shot lately?


    • September 20, 2009 at 12:27 am

      Today I finally ventured out of the house (a bout of depression kept me close to home). I had a nice time and enjoyed the car show with my kids and taking some photos. I wanted a couple of last minute shots…we were not there very long…and I started walking down a slight embankment to the creek for some photos. My left leg gave out on me several times! It freaked me out and scared me. No reason that I could find, the incline was not steep and I have walked it before. I wasnt there long enough to walk very much, did squat for photos in some instances, but for the most part I took it easy. This incident scared me and confused me. I recall when I first got sick that my leg did the same thing. I will keep a check on things and will not hesitate to call the dr. He may not know a hell of a lot about this, but he is willing to help and has a neuro backing him up. I have even taken a week off from the Y to rest and let things recoup because I dont want to over do anything and end up relapsing. It is just so frightening to have something pop up out of the blue. I am taking extra B12, drinking Acai and lots of water that is electrolyte balanced. I am off of my “anti inflammatory” supplements because of cost and I can tell the difference…constant tingling and aching, muscles are quick to fatigue and definitely let me know. Also got a bout of depression going on but dr knows I react poorly to meds for it so he isnt suggesting anything right now. I did get my xanax increased which has helped the past few days quiet things so I can relax. Anyhow, not sure what the whole leg thing was all about, any ideas?? Should I be concerned or just keep a check on it?

    • Anonymous
      September 20, 2009 at 10:29 am

      Even after all these years, I will have a flare up of tingling or weakness now and then. There is seldom any reason for it. It use to scare me when my feet went “fuzzy”, but now I just take it in stride. Sometimes it will go away in a day, sometimes it takes a week or more. I have trouble walking down inclines, like a slope, so I usually have someone in front of me to help with that. I know how frightening any reoccurring of a symptom is, but I think we all get them.

      Take care, boomerbabe

My Husband’s Flip Flops!!!

    • Anonymous
      September 19, 2009 at 8:16 pm

      The other day I thought I would try the treck to the end of the driveway to get the mail. Not far, but a journey for most of us with bad feet.
      At the back porch I had my choice of footwear. The rather large shoes of my son and half the kids in the neighborhood, (13/14 yr old boys have big feet), my own shoes that would require me to sit down and tie them up, or I could slip on my husbands flips flops.
      These things are made by Adidas and have “fit foams” written on the sole. They are amazing! There is about an inch of foam on the sole and it must be the way they are constructed because they are the most comfortable thing I have worn since I was discharged. Today I ironed for almost half an hour at a stretch.
      I have bought a few new pairs of shoes trying to find ones that are the most comfortable and will give me the most time walking. I have tried a much bigger size, thinner soles that will allow my feet to move, and digging out my oldest shoes to feel if they would help. These flip flops are the best.
      Unfortunately, they are ugly, about eight sizes too big, and look really stupid on my feet.

      So if anybody knows of really good shoes for us with feet residuals, let me know. Ladies please, I know I am not at my feminine best in my hubby’s footwear.


    • Anonymous
      September 19, 2009 at 9:57 pm

      guess what..adidas makes the flip flops for women too and they are em..even though i can’t wear flip flops or sandals because for some reason my feet sweat too bad if I don’t wear socks (which makes no sense…). but i do wear them when i can..other than that good luck..

    • September 19, 2009 at 10:19 pm

      Hi wrtr Mom:
      I went to the website and bought a clog called the “Specialist”
      it has non-skid soles and comfy support in the bottom and they are affordable. I also clicked on their outlet store.
      Crocs helped when I needed to protect my feet and I had pain, but now that I am better I realize they don’t help my balance or help me to attain a normal walking gait.
      I now wear regular walking shoes with the removeable arch supports that were prescribed before I developed CIDP.
      I only wear the crocs once in a while now and I still need my walker outside.
      I have been thinking about the Earth Shoe, but I can’t wear sandals or thongs, because they slip off my feet and I don’t even feel it. Earth shoes are expensive. I would want to be sure before I spend the money
      I suspect that your needs are different than mine, but I hope this helps.
      There are lots of options out there.

    • September 20, 2009 at 12:18 am

      The only shoes I have found comfortable is my converse hightops…thank goodness! I have a pair of winter boots that end up making my legs and feet hurt so badly, and a pair of open toe sandals with a cushion sole that are not too bad for short periods. The converse are flat and none irritating most of the time…but heck even sometimes I can not bear socks touching my feet! I have read in another post about show preferences and there were some great ideas. New Balance seemed to be a good choice (a bit pricey for me right now, but I am seriously considering the investment).

    • Anonymous
      September 20, 2009 at 10:36 am

      I wear New Balance walking shoes. You can usually get them on sale at Penneys, and they come in different styles. I also have several pairs of low cut boots by Easy Spirit that are great in the winter.

    • Anonymous
      September 22, 2009 at 9:49 pm

      I wear new balance. I now have CIDP(GBS first) I wear an AFO on the left leg. When I do my pool exercise i have another pair of New balance for that becoause i dont wear the brace in the pool and cant stand to be bare foot.

    • Anonymous
      September 27, 2009 at 12:41 am

      The only footwear I wore this summer was a pair of suede desert boots (ankle length) with a pair of ‘foam cushion insoles with arch supports’ inside them. I couldn’t stand to wear any sandals because of the foot pain. Running shoes always seemed to press and hurt.

      Winter is coming and I’ll again be wearing my snow boots (felt lined), because at least that way my feet won’t freeze. I’ve tried wearing my lined flight boots, but I can’t tell when my toes are freezing, and a few times I got frostbit, and with the GBS pain, it was awful for weeks/months afterwards.

      Indoors, when I’m working in my music studio, I now wear men’s thick, black cotton dress socks inside a pair of suede ankle boots. They’re really comfy and I always buy the kind that stretch easily at the tops.
      Also, I often wear a pair of quilted ankle bootees for house slippers.
      The soles of my feet get chilled very easily, so I’m thinking of taking a pair of flip-flops, removing the straps and just setting the sole into the bottom of my bootees, to insulate my feet from the cold. That’s about 1/2 inch of good thick hard foam, and with another pair of insoles on top of that, I should be able to be both warm, comfortable, and have some foot support too. As long as they don’t press against my feet, I think I can stand it because the tingling in my feet isn’t horrible anymore like it was the first year. Now it’s more subdued and manageable. Sometimes it hurts a lot, and it’s hard to be patient, I know.

    • Anonymous
      October 3, 2009 at 1:08 pm

      My feet hurt no matter what. I’m not able to wear flip flop or sandals because my numbness makes it hard to keep them on my feet.

      Now that I’m no longer in AFO’s I have switched to slip on rubber soled flats. so far they are all the same pain wise. I really miss my stylish heels. Sigh.

      I’m new to GBS (1/1/09 onset.) I keep hoping I’ll hear good news, but my neurologist thinks I need to accept that I won’t be wearing my designer shoes anymore. Sigh.

      At least I’m not comfined to tennis shoes anymore! I had to remove my links to my favorite shoe companies, because it just makes me sad.

      I’m very happy you found something that helps with the pain.


    • Anonymous
      October 5, 2009 at 12:58 pm

      Hi Noni,
      The tingling, burning foot pain was worse for me during the first year and a half. I though it would never get any better, and at times I could hardly stand the pain, and my patience with it was running out, when I began to notice an improvement. The pain lessened and I wasn’t always stressed because of it anymore. I still cannot wear any sandals that have a strap between the toes, or if the straps are tight or rounded because of the pressure/pain. But I can wear the flat canvas-strap sandals, or flat leather strap sandals with light socks(once I’ve stretched them out with a shoe stretcher).

      With the cold season coming on, my feet are chilling, tingling and burning a lot again, but certainly not as much as the first awful year of GBS. I hope you will find that the pain lessens as the months pass, and even though I can’t wear heels anymore when standing, I can at times wear my suede 2″ high heel dress shoes while sitting at work. May things get better for you too!

I had never heard of it…… until I got it!

    • Anonymous
      August 19, 2009 at 8:23 pm

      In May of this year I had a brain tumor removed. Three days in the hospital, released and feeling right as rain. One week latter I just started violently throwing up. It was uncontrollable. Having been warned, “If something, anything happens, go directly to the hospital, after brain surgery going to your doctor won’t help”, my husband took me to the hospital.

      I remember getting to the emergency room at the hospital where they had done the original surgery. I cannot remember the next three days, and thankfully only vaguely remember the next three weeks. The brain is a marvelous thing! I believe that because I was in so much pain, my brain says I do not need to remember that, and I cannot remember what was my most painful period.

      Because it was brain surgery the first thing they suspected was bleeding or something to do with the surgery, both the neurologist and the surgeon were consulted, within the first few hours. They had done a CT scan and a MRI but nothing could be seen.

      By now it was about 8 hours into it. I had only been given something for the nausea, as they were afraid that painkillers would mask the new symptoms. The paralysis started. They moved me to the intensive care unit. By this time my husband was dealing with a half of dozen doctors with a half a dozen different opinions. Eventually they discussed the possibility that it could be Gillian Barre. They did a lumbar puncture, which confirmed the GBS. Over day 6 and 7 they administered immunoglobulin therapy, and I was on my way to recovery.

      This is where I start to remember things. There was a lot of hammering on my knees and elbows to test what was left of my reflexes, there was a lot of don’t touch me to the nurses, and a lot, a lot of drugs to keep me sedated. By now I tubes inserted into every orifice on my body! Feeding tube, breathing apparatus, catheter, intravenous and a pick-line. They also had a very fine tube that went into my arm vein, traveled up to within an inch of my heart: this monitored my blood pressure as accurately as possible. One of my sisters happened to be in the room when my heart rate dropped to 43!

      I was two weeks in the ICU when they were able to move me to the critical care unit. I had already regain use of my hands and arms. While in the CCU they did a tracheotomy. That was the worst ten days of my life! I could only communicate by writing on a white board, or using an ABC chart. I didn’t even have the dexterity to type! I could not imagine living in a world without communication.

      Apparently I forget to breathe when I have morphine. So, no more morphine for me.

      26 days from onset of symptoms they remove the trach, take out all the tubes and I got to eat something. I don’t think hospital food was ever more appreciated. My upper body was fully recovered, except for some “fizzyness” in the tips of my fingers. I was able to get into a wheelchair. 49 days from onset I was transferred to a rehab ward, and on day 50 I stood for the first time in the parallel bars. On day 67 I was released from the hospital, the only remaining issue is the fact that my feet are numb from the balls of my feet to my toes. Of course I still have to continue my exercises to strengthen the muscles in my legs, but on the whole I feel amazing!!!!

      During the first week the doctors told my family to be prepared for me to be in the hospital for months and rehab after that and not be home for a year. I told them that I would be walking home for Christmas. Now I am at home doing most of what I was doing before, occasionally hit by fatigue, making things work. My thirteen year old hovers around me like a mother hen. None of my cloths fit me anymore. And I still kind of walk like a duck.

      Since my experience, I am surprised how many people have come up to me to say “my sister or brother or somebody had GBS”. I see now that they mention it on ads for some inoculations.

      I was happy to find this site, heartbroken to read some of the stories, and inspired to share mine. I look forward to reading more on this forum.

    • Anonymous
      August 20, 2009 at 12:01 am

      Glad to have you with us. You are now part of a very unique family. So welcome and enjoy.

    • Anonymous
      August 25, 2009 at 1:06 am


      Neither had I heard of it….. until I had it!

      Your message was very moving. Although my experience with GBS started two years ago I could relate with most all phases that you described. I am very pleased that you have made such a remarkable recovery. For all of the suffering that comes with GBS it nevertheless becomes a defining event in our lives.

    • Anonymous
      August 26, 2009 at 8:07 pm

      Following or even prior to your surgery? Some anti-b’s can contribute to problems that might have been possibly ‘developing’ before, during or in concert with all else thats been going on. It happens and cannot be either, as a rule, predicted or prevented per se. In the meantime? Count your blessings that you MADE IT! And, PT and other testings and work will be very hard to do-don’t give up! EVER!!!!!!!!!! Learn and respect your limits.
      I don’t blame you for fighting to get outta rehab! I was there for 3 weeks recently and while the PT was good? Food and all else was abhorrent!
      Yes! Walking like a duck is common at first and sort of normal… I truly hope you find really GOOD PT folk who learn about your medical issues and can help you! Finding them is not as easy as it seems – be careful of therapists who want you to not only WORK? But, OVERACHIEVE….that gets us over-tired and-well things happen not to be considered. Say WHOA to the ‘achievers’-slow and steady gets better results and ask/demand for a home program [if outpatient] so you can work on stengthening at home. I’ve found that really helps!
      Plan every trip in the wheelchair, every step on the walker and then each and every step using a cane [be super-sure that the cane is the right height, get PT folk who can/should help you or web it up under ‘canes’].
      Now, lastly? Go give that child some special attention or a really special treat of some sort? Plus a heap of HUGS, wanted or not it [by that good kid] makes a difference in the long run.
      Hang in there, work hard and keep at it! Do not ever lose faith in yourself tho, you know your body best!

    • Anonymous
      August 27, 2009 at 2:57 pm


      Glad to hear you made it through the ordeal fast. I did it about the same way last year. In fact, I went in on August 3rd so right about now last year I was on ventilator too. I still have that weird feeling from the balls to the tips of my toes, but hey, compared to where we were I can handle that for the rest of my life if I have to, right? I went back to work on Octover 13. By now I am so back to full throttle. So keep working on the PT and don’t let anything get you down!
      Johnny Mac

Guillain Barré + H1N1 FLUE

    • Anonymous
      July 27, 2009 at 4:51 am

      i would like to share my thoughts, about the next months, vaccination programmes about the flue H1N1. the countries prepared for vaccinations ,some for all people,some for the kids.they dont know for sure ,the last days of august will deside.the last time that try to vaccinate massive number of people in 1976-usa, the numbers of patients about Guillain Barré was increase hight.
      my son had Guillain Barré this year and i worry about that untested 100% vaccine that coming.


    • Anonymous
      July 29, 2009 at 12:05 pm

      I agree with you. My sister has gbs and I am afraid to give my son the vaccination as well because I have seen the scary outcomes that my sister has gone through and is still going through. I read in a newspaper article that the World Health Organisation is expecting a higher incidents of GBS this year due to the vaccination for the present H1n1 flu.

      As a parent I am close to forgoing the vaccination as you have stated that it has not been tested

Guillain Barré Syndrome -6yo boy(complete story)

    • Anonymous
      March 19, 2009 at 5:46 am

      here is my story,for my 6yo son alex.
      at the begining of february alex have tonsillitis with fever .that was kept about 6 days.everything was going to normal, but i was wrong.suddenly he start complaning that he cannot move legs and was not possible to get up from the bed, but he could walk ,not very easy.the next 2 days we trying find out what is going on with our son.we did blood test for everything that our doctor ask ,and everything was perfect.the third day -as everything was about the same,and not better-.We visit a hospital that in head was the european professor of pediatrics.(why i say that i tell you later.)we get in the hospital and start doing 5 examinations.first was FUNDUS EXAMINATION in eyes,to see the reflection of brain.everything was ok.the second was neurologist exam.third was some more blood test,everything was good.the next one ,spinal fluid is withdrawn from the lumbar region of the spinal column.
      The results: Guillain Barré Syndrome at the early start.
      that was a sok for us,we have never something like that.
      he took antibodies for 2 days.the next days was very very difficult for a child of 6.finally we stay 10 days at the hospital.every day was better after the antibodies.he had to sleep for 25 days.he had illusions every 40 min at night.we did also a magnetic tomography to check the brain .
      now we are home,20 days after we leave the hospital.alex getting better every day.he can run ,as every child.he’s tired fast but is normal.he needs time and rest.
      about the professor i told you before, is VERY IMPORTANT
      to take your child to doctors how know ,and just do it FAST.dont wait.we were lucky says the professor ,that we brought our child at the begining of Guillain Barré Syndrome.
      that was my story that take place in athens-greece.sorry for my english.
      i hope that my story could help people and childrens to face that syndrome FAST . is my mail to anyone how needs more info.
      “enjoy the life you have in front of you ,as good as you can”
      that is what i learn.
      thanks for listening

    • Anonymous
      March 19, 2009 at 7:48 am

      I am so very happy to hear your son is doing better and well on his way to being a normal little man again.

      thank you for telling your story.


    • March 19, 2009 at 9:46 am

      sorry no info

    • Anonymous
      March 24, 2009 at 8:19 pm

      Hi George,
      I am so happy to hear that your son is doing so well. Please remember to have him rest when needed. Give him a big hug and enjoy everything you can.

      Take care

    • Anonymous
      April 28, 2009 at 3:31 am

      after 3 months of rest ,alex is 100% recover.back in school,running like before.i found a book named”GUILLAIN-BARRE SYNDROME” Gareth j. Parry
      from the american academy of neurology.that book has everything from diagnosis to recovery and i found everything i faced in my son.

    • Anonymous
      April 28, 2009 at 7:24 pm

      I was/is a patient of Dr. Parry.. He is very knowledgeable.. You are very lucky and blessed to have good doctors that were smart and aware enough of symptoms to get the critical early diagnosis..
      Great to hear that your son is back to 100%….Deanop:)

Guillain-Barré syndrome: what is it?

    • Anonymous
      August 30, 2008 at 9:31 am
      Saturday, August 30, 2008

      Guillain-Barré syndrome: what is it?

      Living with a creeping paralysisGBS or Guillain-Barré syndrome is an acute disease of the peripheral nervous system which causes damage to the myelin sheath around the nerves, causing them to stop working, resulting in loss of sensation and limb paralysis, sometimes accompanied by pain.

      Some patients have a similar but longer-lasting illness called CIDP (chronic inflammatory demyelinating polyneuropathy).

      There are about 100-120 cases of GBS a year in Ireland. The first symptoms are usually tingling and numbness in the fingers and toes, with progressive weakness in the arms and legs over a few days.

      In the milder cases, this weakness may stop and cause only moderate difficulty in walking, requiring sticks, crutches or a walking frame.

      In some cases the weakness progresses and leads to complete paralysis of the legs. The arms may also be affected.

      In a quarter of cases, the paralysis progresses up the chest and face and the patient is unable to breathe on his or her own and needs to rely on a ventilator and a feeding tube.

      GBS improves spontaneously. However, certain factors can assist recovery, according to the GBS Support Group.

      These include good nursing and medical care, physiotherapy and hydrotherapy, therapies that relieve discomfort and prevent stiffness, immunoglobulin infusion of immunoglobulin, plasmapheresis and counselling – because a high proportion of patients get depressed during the gruelling recovery phase.

    • Anonymous
      August 30, 2008 at 10:34 am

      This article makes GBS sound pretty tame. Unfortunately that is one of the basic problems with GBS and related disorders. Getting the public and even the medical community to understand the true extent of this disorder and its long term effects continues to be a struggle.


    • Anonymous
      August 30, 2008 at 3:02 pm

      Stating that GBS improves spontaneously. What does that mean exactly. It has been 16mo. for me. How long does this recovery take? I have heard 2 yrs. and I have heard many years. I am unabvle to walk alone and have so many limitations. I know I have to be patient but or how long?
      Can anyone answer these questions?

    • Anonymous
      August 30, 2008 at 10:21 pm


      I am so sorry that your recovery is taking so long. The terms used to describe GBS like “spontaneous recovery” and “residuals” should be outlawed. When I had GBS almost nothing was known about it and very few studies were being done. I find it obscene that, 30 years later, there is still such ignorance and few studies being done.

      Take Care, Susanne

Campylobacter Infection and Guillain-Barré Syndrome

    • Anonymous
      August 12, 2008 at 6:43 pm

      Association between Campylobacter Infection and Guillain-Barré Syndrome
      Ban Mishu Allos

      Division of Infectious Diseases, Vanderbilt University School of Medicine, Nashville, Tennessee

      Guillain-Barré syndrome (GBS), a neurologic disease that produces ascending paralysis, affects people all over the world. Acute infectious illnesses precede 50%-75% of the GBS cases. Although many infectious agents have been associated with GBS, the strongest documented association is with Campylobacter infection. The first line of evidence supporting Campylobacter infection as a trigger of GBS is anecdotal reports. The second line of evidence is serologic surveys, which have demonstrated that sera from GBS patients contain anti-Campylobacter jejuni antibodies, consistent with recent infection. Finally, culture studies have proven that a high proportion of GBS patients have C. jejuni in their stools at the time of onset of neurologic symptoms. Neurologic symptoms are more severe and more likely to be irreversible when GBS is preceded by C. jejuni infection. One of every 1058 Campylobacter infections results in GBS, and 1 of 158 Campylobacter type O:19 infections results in GBS.

US FDA, CDC back Merck’s Gardasil shot as safe

    • Anonymous
      July 27, 2008 at 9:14 am

      US FDA, CDC back Merck’s Gardasil shot as safe
      26th July 2008, 09:02 am

      Tue Jul 22 20:20:58 PDT 2008

      (Recasts; adds details, background on sales, Merck comment)

      WASHINGTON, July 22 (Reuters) – Merck & Co’s Gardasil vaccine remains safe and effective for protecting women and girls from a virus that causes cervical cancer, U.S. officials said on Tuesday after reviewing thousands of reports of health problems.

      Consumers, doctors and others have raised questions about Gardasil’s safety but the Food and Drug Administration and the Centers for Disease Control and Prevention said the most serious adverse events did not appear linked to the vaccine.

      “Based on the review of available information by FDA and CDC, Gardasil continues to be safe and effective, and its benefits continue to outweigh its risks,” a statement said.

      The agencies said they reviewed more than 9,700 reports of health problems following Gardasil injections.

      Six percent of the cases were deemed serious events. They included 20 deaths reported as of June 30.

      “There was not a common pattern to the deaths that would suggest they were caused by the vaccine,” the FDA and CDC statement said.

      In cases where autopsy or other records were available, “the cause of death was explained by factors other than the vaccine,” the agencies said.

      Other serious problems that were reported included a rare neurological disorder called Guillain-Barre Syndrome. Data “do not currently suggest an association” between Gardasil and the condition, the FDA and CDC said.

      Gardasil targets four strains of the human papillomavirus (HPV), a common sexually transmitted virus that causes genital warts and most cases of cervical cancer. It is approved for women and girls ages 9 to 26.

      The vaccine is one of Merck’s top-selling products but its sales have been under pressure. On Monday, Merck projected 2008 Gardasil sales of between $1.4 billion and $1.6 billion. That was down from its prior view of $1.9 billion to $2.1 billion.

      The lowered forecast was due in part to Merck’s failure earlier this year to win U.S. approval to market the vaccine to an older group of women.

      Merck has distributed more than 16 million Gardasil doses in the United States.

      Merck spokeswoman Amy Rose referred to a July 8 statement in which the company said it was confident of Gardasil’s safety.

      (Reporting by Lisa Richwine; editing by Brian Moss and Tim Dobbyn)

      Provided by Reuters

      © Reuters 2008 All rights reserved

      Category: Healthcare & Pharmaceuticals | Comment (RSS) | Trackback

    • Anonymous
      July 27, 2008 at 9:43 am

      I really don’t think that vaccine is safe and really think it needs further study. A friend of mine’s daughter had the vaccine and landed in the hospital for 3 weeks ICU. They still did not want to say it had anything to do with the vaccine. She developed grand mal seizures 15 minutes after she had the vaccine.
      She is at home now, but now has to take seizure medication and never had any seizures before until she had that vaccine.
      In fact I don’t trust vaccines anymore at all. I was getting sick way before I had a Hepatitis Vaccine, but not really bad. As soon as I had that vaccine in the 90’s, I started getting bad nerve damage and an attack on my nervous system.
      Leading me to believe I may have some mild traits of Gullian Bare Syndrome with CIDP. I am not sure but everytime, I have surgery or needles, I get sick!
      I would never put my daughters on this vaccine. I think it’s too early to tell what it may cause. Just like silicone breast implants they had years ago saying they were safe and then look what happened there?
      Very good subject here that I could go on an on about! Thanks for bringing this up!

    • Anonymous
      July 27, 2008 at 6:26 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]i’m always amazed by the way the FDA sweeps these ‘serious events’ under the rug. One would think that even 1 death would be enough to back off and take another long look.
      i still remember the horrors of Thalidomide.[/SIZE][/FONT]

    • Anonymous
      July 30, 2008 at 11:50 pm

      Just guess where all the money is . . . GRRR!!!

    • Anonymous
      August 4, 2008 at 3:48 pm

      [B]I have been saying this for years, it’s always about the $$$$$$$$$ 😡 [/B]

    • Anonymous
      August 5, 2008 at 7:55 pm

      And we all pay the price…but not just with money, with our health and our lives.

Guillain-Barre’ Syndrome

Jean Alexandre Barré

    • Anonymous
      April 26, 2008 at 8:37 am

      Jean Alexandre Barré (May 25, 1880 – April 26, 1967), French neurologist, worked in 1916 on the identification of the Guillain-Barré syndrome.

      He is also credited with the Barré test, which may identify “pyramidal drift”. This test is performed by making the patient stretch out his hands with the palms to the top, and requesting him to close his eyes. If one hand drops involuntarily, the test indicates damage to the pyramidal tract.