Effects years later….. any studies?

John Fitzen usually finds studies like that. I’d sure be interested to know also.

I’m just wondering if we are chasing the tail.. I’m wondering if initially all of us get gbs, some get it fast and furious from a bacteria, others get it slower… From Gullian Barre onset, some of us remit, and sooner or later, some of us relapse.. i.e. cidp or other varitations of the same disorder… This is my uneducated thought; then again, alot of doctors are stumped as well…good luck on your quest…..deanop

Actually, Dr. Parry talks about this “post-polio type syndrome”in his latest book on GBS & CIDP. Even in those individuals who appear to make a complete recovery from GBS, the nerves that remyelinate to heal those that were damaged are never as strong as the nerves we are born with. So, many years down the road, these nerves can weaken & this is what causes one to have residuals later on in life. Just like something that has been glued or taped; never quite as strong as the original, even though it may appear to be for a certain length of time. Makes sense to me…
Pam

It would be nice to see the research they have done on GBS and long tern effects. That is an interesting subject.

I re read your post… I think its dead on that what people call residuals/flare ups/ whatever, that in fact it is the gbs, or any other version of the same…. I think Pam’s got it right about our nerves are not the same as the ones we are born with.. I would like to read Dr. Parry’s book, as I’ve seen him a couple times regarding my treatment… Right now, I’m on his plan… Some stuff good/some not so good…..(That’s for a different post)..
Boomerbabe, I think your nerves have never really healed 100%, and you never really were “cured”, but your body has kept the nerve structure intact, tricking your brain all is well….
I think one way to know for sure would have been to track you with ncv/emg tests pre and post gbs…
Where did you find this study italian? Hope all stays well with you…deano

Boomerbabe, you are talking my story!

I had GBS 25 years ago. I was told I was completely recovered but now I am struggling with residuals that have intensified over the last few years. I always had some tingling and numbness, but it has gotten so bad the last few years that it drives me nuts some days. I have twitching, electric shocks, stabbing pains, numbness, buzzing, tingling, pins and needles, spasms and muscle cramping, etc, etc. etc.

I do believe in post GBS although I agree we were never 100%. I also believe that I may have done myself more harm than good over the years. Because I was told I was completely healed, I pushed myself to live a “normal” life and I think I may have done more damage than I needed to. I hope people getting GBS today take care, rest when their body tells them to and learn to live at a bit slower pace.

I found this on a site called the Post-Polio Network:

An article, Post-Everything Syndrome, appeared in the American magazine, New Mobility (September 2000). Author, Bonnie Moulton, discusses how polio survivors have raised medical and community consciousness about the late effects of all disabilities. She writes, We should give credit where credit is due. Polio survivors – inarguably the largest, most vocal and most politically active disability group in history – have fought to get health care providers, insurance companies and policy makers to recognise that for millions, the experience of polio didn’t end with recovery from the initial illness. The model of self advocacy they created has extended far beyond any single disability. She goes on to describe how survivors of spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome, long term amputation and other physical disabilities considered to be static are experiencing late effects that seem like early ageing. As you will recall from the Network’s booklet Helping polio Survivors Live Successfully with the Late Effects of Polio, some polios develop post-polio syndrome which would seem to be unique to polio survivors. Most polios develop late effects due to the wear and tear of living with a compromised body. It is this that causes problems for people with other physical disabilities. Whatever the causes of their symptoms the different groups’ experiences are often remarkably similar. Pain tops the list, followed by increased fatigue, decreased endurance, increased spasticity and new muscle weakness … protocols that have helped polio survivors, including a transition to a ‘conserve to preserve’ lifestyle may be equally valuable to someone with spinal cord injury or spina bifida. It means that people with Guillain-Barre syndrome have every reason to print out an article from a post-polio Web site and tell their family care physician, ‘This sounds like me! Let’s try some of these things’. The stories in the article will sound familiar to polio survivors. Ken, aged 51, with cerebral palsy, says, You slowly, or sometimes quite suddenly, realize that you can’t do things you used to do easily. Then you realize that you’re not really THAT old. That’s the frightening part. Steve, aged 59, who has spinal injury was told by his physiotherapist ‘You have two speeds now, slow and stop’ … I can’t do six things in one day anymore … As I’ve grown older I’ve learnt to make sure that I don’t make too many demands on myself. As I get better at doing that, I’ve begun to be at peace. The author argues that people with long-term disabilities are more alike than different so they should be a community rather than a collection of enclaves. To have access to services and supports we’ll need as we age, we need to build coalitions. Moulton has much to say about the failure of medicine in handling chronic conditions. She quotes one doctor who recommends that people with late effects of disability consult a specialist in rehabilitation medicine or in sports medicine, Why sports medicine? Once you’ve had a disability for 30 or 40 years, the analogy that you’re doing a marathon (every day!) doesn’t seem that far off. For this we pay a price. ‘There is no doubt that the presence of a disability causes a person to expend more physical, emotional and mental energy every day than a person who does not have a disability’, confirms Renee Kirkby, an amputee for 30 years.

Jeff

Boomerbabe, I am 54. You aren’t alone in what you are experiencing. It helps knowing others are having similar issues. For me it validated that I was not losing my mind! 😀

Jeff,
Thanks for the info. There are days that I just feel so bad and then days that I feel wonderful. I realize it all has to do with my activity and the amount of nrest that I get. It is so hard for me not to push myself :rolleyes: Hearing so many others issues that sound so familiar is really helpful.
Thanks again,
Cathy:)

Cathy-you are welcome. I know how you and everyone else feels. I am 62 now and think age affected my recovery. I can also feel more pain 3 years later than I did at the beginning. It is scary to think that residuals might get worse but I know how much I have to rest to stay on top of things and will do what is necessary to stay as healthy as possible. Jeff

Boomerbabe, obviously you are not alone. You’ve sparked a good conversation here regarding post GBS ‘whatever’. Wouldn’t we all love to have a pat answer on just what ‘whatever’ is and means for us in the future.
I’m 4 years out and didn’t have the best care when diagnosed. I promised myself that this summer I’d get some answers and I have. IT’s a mix of finding the right people and the right place and realizing this is all very individual. But I fully agree you never get over the affects. In 4 years I don’t know that a day has passed that I wasn’t reminded what I went through when being diagnosed. Fatigue, muscle weakness and all the zaps and zings are always there to jar my memory.
Good topic

[I]Officially[/I], to those doctors who are in the know, what happens to some of us many years or decades later is called ‘Post GBS’. (I am trying to find the articles etc.) Many in the medical community, as well as some patients who this doesnt happen to, dont believe that these symptoms are real, or are in fact caused by GBS.

After being completely paralyzed and on a trach from 6 weeks, my life was kind of normal, with a few problems that held me back, for about 17 years, and WHAM, since then I have been living with terrible fatigue, pain, weakness, etc. Almost every test under the sun, a neuro and couple of docs later saying that post GBS isnt anything, BUT after lots of research and listening to many a lecture from the foundations board, I now know that these doc’s are starting to realize that Post GBS is a very real thing, and that many of us suffer from it.

Also, a member called Wheelchair Dan has spoken to me on a few occasions and has been to a post polio expert (at a special clinic that deals with post polio patients) who says GBS in some cases, NOT all, GBS should be treated EXACTLY the same as post polio. His motto is, Conserve to Preserve!

I was also reading an article a couple of years ago – and I am such a wally because I dont keep these in one place – that spoke about a man who had GBS in his late teens, at the age of about 41, things started to go down quite rapidly (he didnt have CIDP), he is about 63 now and in a wheelchair and find it difficult to do the smallest things. this they blame on Post GBS and is very similar to what I thing Wheenchair dan is going through. Dan has also got a thread going where he posts lots of articles explaining post GBS, i will find it and bring it up again and you may find a number of things in there that i have touched on and that you may find very interesting. I will also contact him so that he can give his input here.

I really believe it will take a long time for the medical community to ‘get’ this unfortunately, and unfortunately there is nothing we can do but try to alleviate our symptoms. like those who are in recovery, those of us who do suffer from Post GBS need to change our lives and live according to what our bodies dictate, that, I believe is the only way to approach it.
I find myself going through the same grieving process, over the last 5 years, over and over ……… denial, anger, depression then acceptance – however, my periods of accpetance are lasting longer, regardless of what stage my body is is in at that particular point. I do however grieve for some of the things I am no longer able to do as ‘easliy’ as I was a number of years ago.

One post from Dan.

[QUOTE]
07-02-2007, 01:51 AM
[URL=”http://www.gbs-cidp.org/forums/member.php?u=4773″][URL=”http://www.gbs-cidp.org/forums/image.php?u=4773&dateline=1180639705″]http://www.gbs-cidp.org/forums/image.php?u=4773&dateline=1180639705[/URL][/URL][URL=”http://www.gbs-cidp.org/forums/member.php?u=4773″]wheelchairdan[/URL] [IMG]http://www.gbs-cidp.org/forums/images/statusicon/user_offline.gif[/IMG] vbmenu_register(“postmenu_39565”, true);
Member
Join Date: May 2007
Posts: 44

[IMG]http://www.gbs-cidp.org/forums/images/icons/icon1.gif[/IMG] [B]Were all in the same boat[/B]
Late effects of other disabilities

An article, Post-Everything Syndrome, appeared in the American magazine, New Mobility (September 2000). Author, Bonnie Moulton, discusses how polio survivors have raised medical and community consciousness about the late effects of all disabilities. She writes, We should give credit where credit is due. Polio survivors – inarguably the largest, most vocal and most politically active disability group in history – have fought to get health care providers, insurance companies and policy makers to recognise that for millions, the experience of polio didn’t end with recovery from the initial illness. The model of self advocacy they created has extended far beyond any single disability. She goes on to describe how survivors of spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome, long term amputation and other physical disabilities considered to be static are experiencing late effects that seem like early ageing. As you will recall from the Network’s booklet Helping polio Survivors Live Successfully with the Late Effects of Polio, some polios develop post-polio syndrome which would seem to be unique to polio survivors. Most polios develop late effects due to the wear and tear of living with a compromised body. It is this that causes problems for people with other physical disabilities. Whatever the causes of their symptoms the different groups’ experiences are often remarkably similar. Pain tops the list, followed by increased fatigue, decreased endurance, increased spasticity and new muscle weakness … protocols that have helped polio survivors, including a transition to a ‘conserve to preserve’ lifestyle may be equally valuable to someone with spinal cord injury or spina bifida. It means that people with Guillain-Barre syndrome have every reason to print out an article from a post-polio Web site and tell their family care physician, ‘This sounds like me! Let’s try some of these things’. The stories in the article will sound familiar to polio survivors. Ken, aged 51, with cerebral palsy, says, You slowly, or sometimes quite suddenly, realize that you can’t do things you used to do easily. Then you realize that you’re not really THAT old. That’s the frightening part. Steve, aged 59, who has spinal injury was told by his physiotherapist ‘You have two speeds now, slow and stop’ … I can’t do six things in one day anymore … As I’ve grown older I’ve learnt to make sure that I don’t make too many demands on myself. As I get better at doing that, I’ve begun to be at peace. The author argues that people with long-term disabilities are more alike than different so they should be a community rather than a collection of enclaves. To have access to services and supports we’ll need as we age, we need to build coalitions. Moulton has much to say about the failure of medicine in handling chronic conditions. She quotes one doctor who recommends that people with late effects of disability consult a specialist in rehabilitation medicine or in sports medicine, Why sports medicine? Once you’ve had a disability for 30 or 40 years, the analogy that you’re doing a marathon (every day!) doesn’t seem that far off. For this we pay a price. ‘There is no doubt that the presence of a disability causes a person to expend more physical, emotional and mental energy every day than a person who does not have a disability’, confirms Renee Kirkby, an amputee for 30 years
[/QUOTE]

Okay, there is a lot to wade through in this thread, but it may be worth sifting through for those pertaining to post GBS.

[php]
http://www.gbs-cidp.org/forums/showthread.php?t=2615
[/php]

Bbabe,

I know that the Dutch neuro’s are very active in studies, Drs. van Doorn and Dr. Mertjies (sp?) have been doing a lot of research …… I would LOVE to go and meet with them and have a chat. I met the Dutch Liaison at a Liaison Conference last year, really a lovely lady, and I have been thinking about (thinking only, not sure when, if ever, i will ‘put into action’ the thought) connecting with her again and seeing if we could speak to these two Ds. I have a close friend in Holland too who is going through the same, unfortunately he wont take the step and try and see them :confused: – from what I have read about these two, they really do seem to want to find answers.

I have communicated with WheelchairDan, and like a lot of us, he had taken a little bit of a break from the forums, but he did say he would have a look at this thread soon – he really does have a great deal of info and has been suffering badly like some of us have.

Bbabe, there is soooooo much I wish I could bring awareness to, Post GBS being one, the toll GBS/CIDP takes on our families and the lack of understanding within a lot of families being another – I just wish I had the energy and stamina to follow through. But, maybe you have got the fire lit under my bum again, and maybe we can do something, it will be an uphill battle, buuuuut, maybeeee…… who knows….. I know I’m just sick of feeling sick and tired, and tired of doctors not being prepared to listen!!! And I have only visited the doctor once in the last year, surely they would realize most of us are not attention seeking.

Ali,

Great to hear you too are going through a post GBS. Well not great but it is great to know we are not alone in this new struggle. I have asked the University here in Saskatchewan to do a study of people like us who years later begin having residuals. I have not gotten a response but maybe I should pursue it further. I am finding there are a lot of us going through this. Hmmm.

This has been a very interesting conversation and I am learning alot in here. Thanks to many sharing and caring people in here. Kind of bad though our doctors don’t sit down and really explain the entire details but that could probably take them too much time. But the learning experience is so very helpful especially to me.
Especially the residuals. Maybe that is also my problems. Having residuals not knowing that is the case. And then not knowing what to do about it. But each thing I learn in here, I try to research it and see if anything can help. Thank-you all for sharing this knowledge to me! It really means alot!

Ali, thanks for the thread info. It is interesting for sure and hearing a bit of Dan’s story helped me to understand a bit of what I am experiencing. Now if we could find someone to do a study. My first words would be “Pick Me!” I know something is going on but I really don’t think dr’s have any idea what to do about it or why it is happening now. Like boomerbabe, I hadn’t seen a neuro for 20 years and saw one for the first time last since GBS last Nov.

There are no records left from when I was ill. Files have all been purged, hospital closed, and little to nothing left so that makes things difficult as we have no baseline info. The neuro that I had 25 years ago is now my mom’s neuro and she was telling him a bit about me and he said it is impossible for this to be GBS related. “It just doesn’t happen!” Little does he know! So won’t be going back to him. I did see someone else as this fellow had no openings. Will stay with this new guy. Too bad I wasn’t told to keep copies of all my records. I thought they kept them indefinitely. Duh! I was also sent home told I was “healed”. Another Duh! Shows how little they really knew back then…..

Two neurologists have told me that there is no such thing as post polio syndrome for GBS just as they assured me I would be completely recovered, that dizziness and lack of concentration are not part of GBS and that my hallucinations during the acute stage were not related either. In my experience neurologists are not the best people to work with-people in rehabilitation medicine are much more open and seem more willing to listen, which is the key. It may be some time before research catches up with us on this one but finding the right doc to work with now is most important. Jeff

Most gbs’ers won’t have this happen but if you happen to be one of the unlucky ones (Probally because of the type of GBS you had) you will be pulling your hair out looking on the internet trying to get answers. Look at Post Polio –It took decades for the System to accept post poilo–Just Imagine how long it will take for us few.Poilio had three types–with GBS there are MANY and Many NOT even known yet. If you think you have POST GBS and had every test done under the sun with NO answers then I suggest looking at a Post Polio Clinic for a diagnosis

[url]http://video.google.com/videoplay?docid=4240163006476883695[/url]

I think if you listen closely you will learn alot about ongoing research being done.

Make sure you watch till the end–questions and answers

Dan, thanks so much for this. I have heard so much about you and have gone back and looked at some of your posts. I have found them to be very helpful in understanding what is happening to me. Thanks for all you do to help us educate ourselves. I am off to watch the video.

As others have said, this is a great conversation! I haven’t been around here much because of the heat (100+). I have been going to a “Tan & Tone” place where the toning is robotic machines. I was told by a district manager there that these machines were designed for post-polio people. This helps verify why this form of exercise is so fantastic. Haven’t lost much in inches or pounds, but the flexibilty and lessened pain is priceless!

Also, this really makes me think I would like to attend the (can’t remember right word) big event in Chicago soon. Braining going fast… need to take a nap.

Important is things he said that sound alot like Polio-(Axon Regeneration)–axon loss–Axon damage. Any the best for last he said in his last sentence of this video –THAT THE SPINAL CORD IS AFFECTED more than they ever thought.