GBS again

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!

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.

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.

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.

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.

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 🙂

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
Harry

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

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?

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

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.

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.

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.

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.

[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.

Ray[/QUOTE]

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.
Paula