GBS again

    • Anonymous
      January 29, 2011 at 10:30 am

      Hello-I am a second time GBS patient…the first time was in Jan 2005 and this time Jan 2011. Both times after a severe infection which started as a cold but got very nasty with fevers, sinus infection and a rather long-lasting but not painful throat infection. Towards the end of the worst part of the infection I woke up to find myself very weak and off-balance. I must say that you have to have had GBS for you to know you’ve got it again and if doctors would put more faith in patients’ input, a lot of time and misery could be saved… my case, IVIG might well have been doable on an outpatient basis, saving time and money. The pain started and at day 6, no longer able to walk, I wound up being transported by ambulance at about 6pm Jan 9 to a major hospital and IVIG treatment started at 2:00 am Jan 10.
      As it was, treatment was started about 36 hours sooner than the last time I had GBS (based on how far gone I was at the time) and the recovery seems to be faster…..I am home from rehab on a weekend pass and walking with a cane (supposed to be a 4-wheeled walker but things seem to coming back fast).
      I was in the major hospital from Jan 9 evening to Jan 18 and then sent to a rehab facility. I am happy with the recovery rate.
      The pain (subjectively) got to an 8 out of ten….bad enough to make me moan and weep and render my skin untouchable even though the pain went deep into the back, hips ,thighs,and groin. This required heavy meds and the pain this time was more severe than last time but not as long lasting. I stopped taking dilaudid 2 days after the 5th IVIG and used only tylenol….but taking Gabapentin 3X daily and still taking it. I don”t know if the pain would be here (in a much lesser degree) if it weren’t for the Gabapentin. I don’t know when they’ll wean me off it.
      Okay that’s all so much history and now I have a question for anyone who may have read this far! If it is true that once you have had GBS, there is a 5% chance of getting it again in your lifetime, then what are the odds of getting it a third time if you’ve had it twice? And it is not considered to be CDIP because it is 6 years apart and other diagnostic reasons lean towards ADIP.

    • Anonymous
      January 29, 2011 at 12:25 pm

      I can not imagine getting GBS again after such an extended period. You must be one of those 5 percenters they so often speak of. I wish you a speedy recovery. Using a cane is a great step. Good luck!

    • Anonymous
      January 29, 2011 at 9:15 pm

      I took a class in statistics once. Seems I recall it’s like flipping a penny, believe it or not, the odds of a heads or tail are always 50%.

      5% chance of repeat? That bears research I’m sure. (I mean, it makes me want to look it up). Think of it like a 100 year flood. You could have two in ten years.

      Be of good cheer, if you can. I bet the chances are very low, regardless.

    • Anonymous
      January 30, 2011 at 9:23 am

      I did some research and read some studies about GBS recurrence and learned that some low percentage of GBSers have a recurrence. The encouraging news is that once you have a recurrence, it is “exceedingly rare” to have a second recurrence. So I really should have googled “GBS recurrence” before posting my quetion at the end of my blurb.
      FYI, this time around they gave me (still am on it) gabapentin which is supposed to aid in the healing as well as control the pain and while the pain was very bad for seven days it waas possible to get off the narcotics after 7 days. Last time the pain lasted longer, but at its worst was not quite as severe as this time around. I am now able to walk with a cane and that is indicative of a faster recovery thus far. I wish everyone could have the same rate of recovery as I am (touch wood!) enjoying.


    • Anonymous
      January 30, 2011 at 10:17 am

      My neurologist (who is a GBS specialist) told me that 1 in 100,000 in the U.S get GBS (which I already knew), and you have 1 in 1,000,000 chance of getting it again.

    • Anonymous
      January 30, 2011 at 10:20 am

      Hello Ray. I had GBS in 1993 and again in 2004. I have read (I think in the foundations literature) the 5% chance of having it again, too. My own Dr. said that the chances are the same as getting struck by lightening, twice! Guess what – we were struck twice:rolleyes: . There was a poster here a few years back who had it 3 times and I don’t remember who it was. That’s the only time I have heard of that. Congratulations on the speedy recovery, so far. Best wishes for continued success and return to health.

    • January 31, 2011 at 4:06 pm

      Hi. I am the one who had it 3 times. Now I believe I had it 4 times. When I was 8 years old I had a hard time walking and my mother took me to the doctor who put me in special shoes with arch supports. I never had any treatment but got over it. The next time it was when I graduated from high school. I was in the hospital and the nurses commented on my feet which had hammer toes and a very high arch. I learned since that GBS caused my feet to be that way. I had no treatment then either, just physical therapy. I got over it in a year. That was 1959. I got it again in 1989 after a viral infection and very stressful job. It took 14 months this time. I had plasmapheresis and rehab. I never had a vent and could always walk, just had to use a walker. I had it again in 2002 after a very stressful time in my life. This time was about the same but I had IVIG on an outpatient status and did exercises at home. Just took Advil for pain. I gradually got stronger after a year. I am 70 now and hope I never have it again. I have no stress in my life now so I am hoping I will never have that tingling and numbness again which was the early signs of it. I guess I was just one of the unlucky ones. I have difficulty with steps and get tired easily but now go to water aerobics and sing in the choir. I have nerve damage still but it is manageable and I don’t require any medication.

    • Anonymous
      February 2, 2011 at 12:48 am

      Have you had symptons between flare ups?? I have chronic GBS or it is called CIPD. I have a flare up once or twice a yr since i was diagnosed in 98. I was back to where i couldnt even stand up on my own out of a lift chair. Someone had to pick me up again. But my flare ups are usually not that bad. I notice weekness in the other flare ups and drop feet 🙁 but i keep plugging along. I have permanent nerve dammage from the first time i was dianosed with GBS. So keep your head up and keep reaching for the stars 🙂

    • Anonymous
      February 2, 2011 at 10:22 am

      What a good feeling it is to be out of rehab and back home. I came home yesterday feb1, 8 days earlier than rehab estimated, but didn’t do much except lie around as I had fatigue and really wobbly. Hands are still a bit numb and my toes and the balls of my feet feel like there is cotton stuffed into my socks. They are weaning me off the gabapentin…good.
      Did I have bouts between 2005 and now?…not really,except to say that it took a long time to get back to ‘normal’ and overdoing it led to a staggering kind of walk. So this was considered to be ADIP. The faster recovery rate to this point is probably due to IVIG getting started earlier this time around.Strength testing–on the weekend I managed two very difficult pushups, today eight, so there is good progress.
      Wow-I cannot imagine having this a third time-the odds are really in your favour now (of NOT getting it again…thank goodness for you, and us all)
      By the way—one of my symptoms was high blood pressure, which has now returned to normal. Did anyone else experience the same? Just curious.
      Also, in retrospect, there were early signs of GBS, I mean before the great weakness.
      Mine were, and I wondered about them but some were transient and over a period of a week or more before the big downward spiral:
      -light flashes with the eyes closed (I take this to be nerve activity of some sort) (transient)
      -cold feet (transient)
      -difficulty releasing bladder (requiring catheterisation in hospital)
      -high blood pressure
      -wobbly walking (transient)
      It wasn’t until suddenly on arising one morning, walking was awkward and weakness set in as well as numbness in hands did I know it was a recurrence.


    • Anonymous
      February 2, 2011 at 11:58 am

      Ray, I had high blood pressure during IVIG but now my blood pressure and pulse are lower then pre GBS. My resting pulse is 48 to 55

    • Anonymous
      February 3, 2011 at 9:10 am

      Hi Harry-that is indeed interesting. Before my first GBS my BP was bumping up towards ‘high normal’ and when I got sick it it skyrocketed to near 200/105
      or so. Then I had BP meds which brought it down and then after recovery the meds were stopped and the BP was normal…like 120/80. Also my heart rate went lower too…in the sixties. Same thing this time with the BP—it is running around 120–130 over 70 to 80 but the heartbeat is still a bit high. Last time it took awhile to drop.


    • Anonymous
      February 14, 2011 at 10:36 am

      Good morning,

      I have had the experience of going through GBS two very distinct times in my life.

      I am now 36 years old (halfway to 72) and was dx’d the first time in 1993 around 18 years old. The second time I was dx’d was in 2007 when I was 32.

      I attended the symposium in Chicago a while back and was explained that propensities for getting GBS again, are being “re-examined” because of a higher number of people having it multiple times. I don’t disagree the figures of 1 in 100,000 and then 1 in 100,000 getting it again – but I was explained that is what is being reviewed by the experts.

      As I understand it, this particular autoimmune class of illness is always evolving – just a few years ago, there was no Miller/Fischer varient nor was there a CIDP classification several years ago…..

      I try not to get into discussing the severity of either one of my episodes – I was on the vent both times – and spent several months in the hospital….and I personally know several people and have talked with them that have had much, [U]much[/U] worse cases than mine.

      The second time was much different than the 1st. 1st time I was a college freshman, ready to whip the world. Rehab was relatively good with little to no residuals.

      Second time, I was 32 with a family, and a pregnant wife. Right smack in the middle of an ice storm. Rehab took a while longer, but I’m doing really good now. I’m blessed with a great family and many of the abilities that I had before. My only residuals are in my feet (icy cold with tingling pain) and the loss of a crainial nerve that controls the left side of my face. I get by – it took a long time to be able to blink that left eye, but it blinks on its own now – no more lacrilube in the eyeball at night.

      All in all, I’m really happy with my progress – I do still get a bit anxious when I start feeling bad. We were pounded with over 20″ of snow this past couple of weeks with temps below zero. When the power flickered, it seemed like deja vu’. But everything worked out and things are warming up now…

      For the longest time, I wondered why and what was it all for and all that jazz –

      Now, not so much.

      Several people still tell me that I should buy a lottery ticket though.

      Brett R. Harrison

    • Anonymous
      February 14, 2011 at 12:23 pm

      I can’t imaging going through GBS twice. Glad to hear you recovery is going well. Since everyone responds to the IVIG differently and in different amount of times, I always wonder how the timining of IVIG affects the recovery (obviously the sooner the better). I mean if you get it sooner do you have a better chance at “full” recovery? Does anyone have any information/studies on the recovery time vs the legnht of time gone before given IVIG?

    • Anonymous
      February 18, 2011 at 8:22 am

      I just had a visit with my neurologist and they ran emg tests which showed the arms to be just about normal and the legs still wanting somewhat. Scheduled to revisit at the end of May.
      He said that you have to hit bottom before recovery will start and even if IVIG is given before hitting bottom, you will still hit it. I don`t quite understand that. (what is the point IVIG then) But anecdotally, my own recovery seems faster this time and I am quite sure that the IVIG was started at a slightly earlier stage this time.

    • February 18, 2011 at 7:00 pm

      Was dx’d just about 4 months ago and rec’d IVIG about 2 weeks after the 1st symtoms appeared. After being released from the in patient rehab I still experienced some deterioration in my hand strength (2 weeks after discharge) 4 weeks after IVIG. When I questioned my nuerologist about this he indicated the IVIG won’t STOP the damage immediately but will lessen how “deep” you will go before you bottom out. Not sure if he was right or wrong? Hope this helps

      Take care

    • Anonymous
      February 19, 2011 at 5:07 pm

      Hi Kevin-I think that what my guy wanted me to understand and what your said are the same thing. It makes sense. It also is in line with my recovery being faster this time, having started IVIG at an earlier phase-my wrists hadn’t totally given out at that point yet whereas the first time they were kaput.
      reminds me of that old saying “I’m sure you think you understand what you thought I said but I don’t think you realize that what I said is not exactly what I meant!”


    • Anonymous
      February 20, 2011 at 12:48 pm

      I got GBS for the first time at the end of august this past summer. Lived in Europe playing for an international lacrosse team. Went into the hospital for a week, got better, but then relapsed with symptoms in mid october. Went back to hospital for another week, got better. Then went back into the hospital a week before christmas with symptoms again. Each time I go back in to the hospital it takes me longer and longer to gain back strength. My tingling starts in my hands and the feet are the last to get the tingles. I am in my senior year at a D1 college and can not play the sport I love. I am miserable but am getting regular treatments in hope of getting rid of this virus.

    • Anonymous
      February 20, 2011 at 2:23 pm

      As a mother of an avid lacrosse player, I feel for you.
      It sounds like you are getting the treatment you need. It is a serious attitude adjustment for all of us.
      Take your love of the sport and use it to encourage others. Coach, volunteer, help a team of youngsters. You will be surprised how being an inspiration to others can help in your own healing.

    • Anonymous
      February 20, 2011 at 4:04 pm

      Thank you for the encouragement. I am actually an assistant for the college team as well as for a local varsity high school team. I find that the more active I am the less I think about the tingling. I do not notice it while I am active but as soon as I sit down to relax the tingling immediately starts. After each relapse the tingling goes away but only for a couple of weeks. I get regular ivig for a whole week once a month. Miss classes for the week which is putting me behind, but I will do anything to kick this.

    • Anonymous
      February 21, 2011 at 10:11 am

      I can’t say I know that much about it but is it possible that you have CIDP and not AIDP (GBS)? Or maybe there is some other weird thing going on that is neither. Did you get a spinal tap and electromylegram tests done to confirm the presence of protein in the spinal fluid and poor nerve conduction? What else is curious about your case is that the hands are the first to go-in GBS (also called ‘ascending paralysis) usually the legs go first and then the numbness in the hands follows. The other thing is that weakness usually is so pronounced that many GBS patients essentially become paralysed. Another thing is GBS often follows a severe bout of some kind of illness…very often the flu. Where you sick before the first episode?
      It may be possible that being young and obviously very fit is standing you in good stead. Doctors have told me of cases where GBS patients have walked away after receiving their IVIGs but didn’t comment on age or fitness levels.
      To many, those tingles are a reminder that we have done a little too much and while not harmful, serve notice to take it easy as fatigue will surely set in.
      best of luck………Ray

    • Anonymous
      February 21, 2011 at 6:22 pm

      Yea I’ve had all the tests done. 2 spinal taps, numerous ekg’s and emg’s, and About 30 doctors have looked at me. There have been discussions of CIDP but as far as I know they haven’t deemed it that. The first time I had symptoms I had strep throat. While getting tested for that I informed my doctors that I could barely lift my arms. I went to a neurologist in my town and was immediately sent to Mass General Hospital in Boston, which isnt far from my home and a great hospital to be at. The tingling is the only symptom I consistantly have and it is only when I am inactive such as getting ready for bed, or sitting in class for too long. I get a 5 IVIG treatments a week, once a month and hopefully this combats it. I am suppossed to be living in Australia this summer for lacrosse, but that might be compromised due to this virus.

    • Anonymous
      February 22, 2011 at 9:18 am

      Mr. Tingles-I forgot to mention that in my case, an MRI showed a stenosis in the neck area. This causes the 2 outermost fingers on each hand to fall asleep, but only when I am relaxing. It makes one wonder if you have two situations going on there. …Ray.

    • Anonymous
      February 23, 2011 at 1:16 am

      [QUOTE=Ray]Hi Harry-that is indeed interesting. Before my first GBS my BP was bumping up towards ‘high normal’ and when I got sick it it skyrocketed to near 200/105
      or so. Then I had BP meds which brought it down and then after recovery the meds were stopped and the BP was normal…like 120/80. Also my heart rate went lower too…in the sixties. Same thing this time with the BP—it is running around 120–130 over 70 to 80 but the heartbeat is still a bit high. Last time it took awhile to drop.


      Harryb and Ray,

      I also had problems with high blood pressure when my GBS started in June of 2007. At times, it would go as high as 180/105. I have never had trouble with high blood pressure my entire life (it always ran about 100/60). I was put on BP meds when in the hospital receiving IVIG and then was taken off of them when BP started dropping too low 3 months afterwards.

      I’m really sorry Ray that you have had to go through GBS twice! I don’t ever want to go through that hell again… I never have figured out what triggered my GBS episode in the first place. Like a lot of people on this forum, I panic when I get the sniffles!

      Glad to see you’re on the mend. Good Luck and hope everything works out ok.

    • Anonymous
      February 23, 2011 at 9:18 am

      Thanks Paula-yesterday saw my regular physician just because I was told he should see me after being hospitalised and rehab’d. My BP was bumping back up to high normal…140/80 but I’ll be monitoring it myself here for awhile.
      The bad news is that it can happen again even though it is ADIP and not CDIP but the good news is that there aren’t enough 3 timers to get statistics on how often it recurs twice.