post GBS, 20 yrs on

Why do [QUOTE]they think it is post GBS, [/QUOTE]? Which of your present symptoms did you have 20 years ago?
GBS can recur. I know a farmer in northern Sweden who has had GBS 3 times and recovered each time.:rolleyes:

hi kiwi & welcome,

if you are concerned it might be a real attack as ken mentions, you could get an emg/ncv. it’ll tell you if it is a real attack or residuals acting up. what you say is happening to you can & does happen. not that it helps, but you are not alone. try resting as much as possible. take care. be well.

gene gbs 8-99
in numbers there is strength

Kiwi,

There are a number of us on the forum who seem to be suffering decades after, that is after a a relatively good recovery. I got GBS at the end of 85, had a trach for 6 weeks and was in hospital for about 3 months. My recovery was quite rapid after that compared to many, and I did suffer from residuals like fatigue and not having the endurance, e.g. not being able to stand for a long period, that I had before. Long story short, for a couple of years now, I have been having issues with muscle weakness (but not all the time), debilitating fatigue, pain in my hands and feet and at times my limbs …. I think you get the idea. I have my good days, and I have my very bad days where it seems too difficult to even lift a phone to my ear.
In some articles, which you may have read, they do ‘liken’ post GBS to post polio.

Here are a few links that you can cut and past, some of them you may have read because they have been floating around the forum.

[URL=”[COLOR=blue]http://www.jsmarcussen.com/gbs/print/residual3.htm[/COLOR]”](cut and paste)
In this article, pay particular attention to the first case study.

[URL=”[COLOR=blue]http://www.angelfire.com/home/gbs/aftergbs.html[/COLOR]”](cut and paste)
and an extract from this says the following ……
[quote]
….. However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury. The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient’s physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS.
[/quote]

I know how emotionally drained and confused you feel right now and am so glad that you found the site. I think the support you will find will help you through some of those very difficult times, especially when no one seems to understand what is going on since you seem to look fine. I am also glad that you seem to have found a doctor who seems to understand that some do suffer from post GBS.

Your story does sound familiar. I did have more residuals than you had from the start (weakness in arms and legs, always tired and in pain) but for about 20 years or so I did manage to go to school, to work and have a social life and hobbies as well. A few years ago I became more and more tired and the pain increased. Now I am unable to do very much at all. The way it works is explained in the links Alison posted.
In many cases slowing down and learning ways to interprete the signals your body send to you can make a real difference, although it takes time to recover and you should always be more careful than people without GBS.
I can relate to your feelings of confusion and insecurity about what is going on right now and about what will happen in the future. You can always come here to ask questions (there are many people here that know a lot about pain medication, have experience with physical therapy and so on) and to feel you are not alone.

Hello kiwi and Welcome,

Ali has definitely provided you with the best info we have on Post GBS. Print those and take those to the neurologist with you. I have also had Post GBS rear its ugly head after a strong recovery and 26 years of near normal life. Like you, I have tingling and weakness in my hands and feet. They ache in varying degrees all the time and it is slowly progressing up legs and arms (although for the past 3 months, no progression). My first visit with neuro and emg-ncv only on hands and elbows gave a diagnosis of Carpal tunnel. This didn’t explain problems in the rest of my body like shoulder, hips, knees and ankles. My next neuro stuck to carpal tunnel and then I did the unthinkable and asked for full body emg-ncv. Waiting on the results from that. I never thought, and still don’t, think I was having a new onset but I could tell it was related to GBS somehow by the way I felt.

What is interesting is gene suggestion of rest… I took that advice (as much as someone with a high pressure advertising job, moonlighting as a DJ and raising 3 kids can) and found that when I do have a good night’s sleep and resting during day, I feel better. When I overdo, I fall apart. After some research I find that Post GBS acts a lot like Fibromyalgia or Chronic Fatigue and I follow a CF diet and supplement program. I took Cymbalta with good results but stopped because I gained too much weight.

And Physical therapy will be starting soon if I can get it signed off on.
I need to find where my boundaries are and develop a program that stays in those limits yet helps me regain strength. Hope this helps, let me know if you have any questions!

mike, the sprays could have been the triggers. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Kiwi,

My fiance Ben is only two years post GBS, but he’s been having almost identical symptoms to your’s. On top of the GBS, he was recently diagnosed with having migraines. He takes Verapamil for the migraines and Quinine pills for the shakiness. (For him, the shakiness looks like something you’d see with Parkinson’s.)

Hope you feel better soon!

Shannon

Mike,

I feel like I should also point out that Ben had a very severe case of GBS, and he’s 39 now.

Shannon

Ali,

You are a master at research! Both articles you found are really helpful and informative. Thanks for sharing them.

SuzyQ

You are obviously having numerous problems. Are you getting any exercise?
I am 62 years old and just acquired GBS on 26 Sep 2006.
When I got home from the hospital I just stayed in bed because all I did when I got up was move from one chair/sofa to another. Sleeping all the time just made me tired. I decided to force myself to exercise before my mucles totally atrophy. I exercise with weights in my garage 3/4 hours crawling from one exercise to another. My wife has to initially help me lift my legs to do leg presses etc. and I use chains and ropes to offset my handicap’s. If I am able I will continue this until I recover from this crap.
I keep falling down but I keep landing in all the right places.
Your doctors will give you the medication you need but you need to take care of the mind and body. Good Luck. I’ll pray for your speedy recovery.

Gene:) 🙂 🙂 🙂

Mike,

I know that ‘smile’ you speak about :rolleyes: . I have been taking some meds that have been helping a great deal with my fatigue and some of my body pain. Didnt ever want to be reliant on medication, but it has improved my ‘quality’ of life i.e. have more energy for the kids, and so I have come to accept that I do need them.:)

Hi Mike: The fatigue from GBS can easily be taken for depression by someone who does not understand it. And the fatigue itself can actually led to depression in some cases, but there is of course a difference between the two. I didn’t notice of you said you were on neurontin or any medication but that might help. I would recommend you keep trying with doctors until you find one you can work with. If they do not have experience with post GBS then educate them if they are open but if they give you that superior smile find another one. The main thing to remember is you know your own body and mind and need not accept another’s opinion. Hold on to what you know and find somebody who will listen. I am going through the same process you are but having a doctor that understands makes a huge difference. Best of luck, Jeff PS having a beer sometimes also works

Just wanted to say that I know what you are going through. I went to the neurologist a few months ago with some questions about pain and fatigue. He performed a strength-check which left me absolutely exhausted and in pain. After that he simply came to the conclusion that there weren’t any problems with strenght. He ignored the questions I had and only followed medical procedure. It really makes you feel powerless, especially because you lack the energy to stress your point and to stand up for yourself after this kind of abuse. Next time I will tell him to find someone else if he wants to prove his power over me through arm wrestling;).

mike,
good article abt pain & fatigue for your neuro to read. also am going to bring it up near the top. [url]http://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=parry[/url]

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it.

take care. be well.
gene gbs 8-99
in numbers there is strength

[QUOTE=ali]Mike,

I know that ‘smile’ you speak about :rolleyes: . I have been taking some meds that have been helping a great deal with my fatigue and some of my body pain. Didnt ever want to be reliant on medication, but it has improved my ‘quality’ of life i.e. have more energy for the kids, and so I have come to accept that I do need them.:)[/QUOTE]

Ali – what medication where you taking – I now feel after 8 months I have to start taking something (I am a Miller Fisher patient).
Thanks,
Sally

I just found this site last night. How great.
My husband is 13yrs post GBS. He made a great recovery. Except for some breathing issuses. But I am starting to see signs. His muscles are breaking down if that makes sense. When he bends his arm at the elbow, just above the eblow looks hollow, bowl like. We ask the doctor about this and he took x-rays but found nothing wrong.
He has more “flu like” day’s. Which I think are fatigue. And MOOD swings like crazy. Should we be asking our Doctor to check him for a relapse?

post gbs 20 yrs on

Hi: It doesn’t sound like a relapse to me but very much like residuals. I can have fevers and flu like symptoms as well as a lot of fatigue as well. You can have your dr check but I think it much more likely he is doing too much or for some reason having more residuals. All I can do when this occurs is rest a lot. Good luck, Jeff

SALLY,

I am so sorry I havent answered your question, seemed I missed it until reading through the posts again.
Funny thing is that I never took meds (aah except for morphine while paralyzed) for 20 years! as I said, it galls me now that I have to take them now. I am on Cymbalta for the overall pain in my body, however my feet and hands still are a problem during the day at times. If I stop the Cymbalta for a few days, my hole body seems to ‘shut down’, and i notice it especially when getting up in the morning, I am in pain all over and shuffle all over the place, its hard to get down the stairs too. Now I can virtually jump out of bed most mornings. Also, I take Provigil, it has definitely improved my daily life as I do not need to sleep most of the day anymore, my sense of humor has come back because I am not absolutely exhaused anymore. There are threads about Cymbalta and Provigil, just do a search to find them, they may be of help. I know that both these meds sometimes do not have the desired result for some, and in fact some have horrible reactions.
I hope that is of some help to you Sally, once again, sorry it took so long for me to reply.

Thank you both. We have a lot to talk to the Doc about.
He has been taking prednisone for 13 yrs. and I think that could have something to do with the MOOD swings. He was never like this before. He notices it too, but can’t seem to help himself. The pain he is in isn’t even touched by the vicodin (he hates taking). So I have wrote down these meds and will ask our Doc about then next week. Thank you again for giving me a little hope. Have a great New Years!!!!!
Suzz

Suzz,

About 18 years post GBS, I started having serious weakness in my limbs, extreeme fatigue, pain in hands and feet, even more mood swings than usual etc. I calaled 911 at 3 am one morning because I had the horrible burning and heavyness in my limbs, and dificulty breathing, like I had only felt 18 years before, so it scared me terribly. Docs didnt even want to listen, they gave me the impression it was all in my head. Firstly, I dont run to the doctor for just anything, I do try and visit them as little as possible …. and, I do know my own body …. after a great deal of research I found out that there are people like me, 10 to 40 years after the initial onset that get these sysmptoms. It has been given the name ‘Post GBS’, and a HUGE majority of doctors do not even recognise it, in the article I am copying and pasting for you to read, it is likened to Post Polio Syndrome. Just a FYI, in case this is something you would like to look into. Look under delayed progression.

[I][B][FONT=arial][SIZE=5][SIZE=2]Disability After[/SIZE] [/SIZE][/FONT][/B][/I][FONT=arial][SIZE=5]
[I][B]“Recovery” From GBS[/B][/I][/SIZE][/FONT]
[SIZE=2]
[I]Kleopas A. Kleopa, M.D., Neuromuscular Fellow [/I]
[I]Mark J. Brown, M.D., Professor [/I]
[I]Department of Neurology, University of Pennsylvania [/I]
[I]School of Medicine, Philadelphia, PA[/I][/SIZE]
[FONT=arial][SIZE=2]
[I]Guillain-Barre syndrome (GBS) is the most common cause of acute neuromuscular paralysis in developed countries. Most patients recover and return to productive, independent lives. In a recent representative survey of 140 GBS patients, 70% made a complete neurological recovery within a year, 22% could walk but were unable to run, 8% were unable to walk unaided, and 2% remained bedridden or ventilator-dependent after a year. Thus, despite the good prognosis for recovery, GBS can cause long-term disability. Persisting disability is largely the result of weakness from the motor nerve injury that occurred during the acute illness. An estimated 25,000 to 50,000 persons in the United States alone are experiencing residual effects from the disease. Most research on GBS has focused on understanding the cause and finding better treatments. Much less attention has been paid to the long-term disability caused by GBS. In addition to the previously mentioned residual weakness, there may be pain, fatigue, psychosocial dysfunction, possible relapses of the illness, and late progression of weakness. [/I]

[B]WONT LET ME POST SUCH A LONG POST, SO i WILL CARRY ON IN THE NEXT POST.[/B]
[/SIZE][/FONT]

[B]CONT. FROM LAST POST.[/B]

[I][B]Pain[/B] [/I]
[I]Moderate to severe pain is a well-recognized symptom during the course of acute GBS. For some patients neuropathic pain, consisting of abnormal painful sensations, may persist after recovery from the disease. In a recent prospective study of 55 GBS patients followed for up to 24 weeks, pain occurred during the course of the illness in almost 90% of cases. Whereas deep aching back and leg pain were the most common early on, abnormal painful sensations and myalgic-rheumatic type pain were observed during the recovery period. Musculoskeletal pain was common in association with physiotherapy. Painful abnormal sensations in the extremities tended to persist after 8 weeks, and were still present in some patients after 24 weeks. In two cases the pain was severe. Overall, pain can be effectively relieved with an escalating regimen of analgesic medications, starting with nonsteroidal anti-inflammatory drugs or acetaminophen, and if necessary including oral or parenteral opioids. Even severe pain can be controlled, sometimes with the addition of patient-controlled analgesia. In a large series of GBS patients treated for pain, these medications were generally effective, and no adverse effects on breathing function or narcotic addiction occurred. [/I]
[I][B]Chronic fatigue[/B] [/I]
[I]Fatigue following GBS is underrecognized by neurologists and rehabilitation physicians, because attention is directed toward the more objective weakness and sensory disturbances. In a recent study of 83 patients recovering from GBS, severe fatigue was reported as one of the three most disabling symptoms by over 80%. The incidence of fatigue did not correlate with age, or motor and sensory residual deficits, but fatigue was more common in women. Fatigue was unrelated to the time since the acute phase of the GBS, a median of 5.2 years in this group. Another study of 123 GBS patients, evaluated 3 to 6 years after the acute illness, concluded that psychosocial functioning, especially in areas such as sleep and rest, alertness, emotional behavior and social interaction, was seriously affected. This was true even when “complete” physical recovery was reached, or only minimal residual deficits were present. Deconditioning and less engagement in physical activities were discussed as possible explanations for persistent fatigue. A supervised training program and low-intensity aerobic exercise may reduce daily fatigue, with improvements in activities of daily living and functional capacity. Specific treatments for other factors associated with fatigue, such as sleep disturbances, pain, and daytime inactivity, are available. [/I]
[I][B]Psychosocial dysfunction[/B] [/I]
[I]Reports of long-term psychological sequela after GBS are rare, although this issue may be a major factor in psychosocial dysfunction of patients recovering from the disease. Many psychological factors could contribute to chronic fatigue and social dysfunction, including fear of disability, inability to cope with physical limitations, and depression following a major illness. The role of depression in psychosocial dysfunction after GBS is not fully understood. The sickness impact profile of GBS survivors was found to differ from the profile of other patients with depression. Nevertheless, further study of the long-term psychological impact of the disease is necessary, and depression should be considered on an individual basis when appropriate. Both supportive psychotherapy and/or pharmacologic treatment can be effective. [/I]
[I]Post-traumatic stress disorder (PTSD) has been reported in a patient following severe GBS with paralysis and a prolonged intensive care stay. The GBS-induced PTSD shared the features of PTSD seen following other traumatic events. Even such profound psychological problems following GBS can be treated with supportive psychotherapy and appropriate medications. They may at least in part be prevented by adequate pain management and the use of a communication system, such as clear lucid letter-board in the event of near complete paralysis. Better understanding, prevention and treatment of these issues may have a positive impact on the quality of life for GBS survivors. Moreover, it is important for patients and their families to know that their psychosocial problems are also experienced by other patients after GBS. [/I]
[I][B]Recurrence of GBS[/B] [/I]
[I]Although GBS is thought to be a one-time disease, relapses and chronic recurrent forms can occur. Patients are often concerned about the risk of having additional episodes of GBS. In a study of 220 GBS patients, 15 were found to have a relapsing course, with one to 4 recurrent episodes. The interval between episodes ranged from 3 months to 25 years. Antecedent events such as a viral infection preceded most relapses, and patients presented each lime with the typical clinical and laboratory findings of acute GBS. All patients had long asymptomatic periods between the episodes. In a more recent study of 476 patients following GBS, 2.5% experienced a recurrence of the acute illness, with a mean period of 16 months between the episodes (range 2-47 months). One patient had three episodes. The authors found no relationship between the risk of having a recurrent episode and the severity of the first episode. Furthermore, the severity of the subsequent episode did not correlate with the intensity of the first episode. Reaching a correct diagnosis may be challenging in these cases. Even GBS experts may find it difficult to separate a “relapsing variant of GBS” from chronic inflammatory demyelinating polyneuropathy (CIDP), especially early in the course. Recurrent episodes of true GBS, although rare, may occur following similar preceding illnesses, and should be treated in the same way as the initial episode. They respond well to the same established treatment modalities. [/I]
[I][B]Delayed progression[/B] [/I]
[I]Weakness from GBS reaches its maximum during the first two or three weeks of the disease. This is the active or acute phase of the illness. After a plateau period of days or weeks, recovery begins, lasting between weeks and two years. During this time strength improves steadily. Strength and sensory function plateau after about two years. However, many decades after GBS, recovered muscles once weakened by the disease may again grow weak. This is a slow process that occurs over years, and may at first escape the patient’s notice. It is likely that this delayed weakness is the effect of the normal gradual age-related nerve cell loss on muscles that have a reduced reserve nerve supply from earlier GBS. The same phenomenon has been observed after poliomyelitis (“post-polio syndrome”) and other forms of acute nerve injury. The incidence of slowly progressive late weakness in GBS is unknown, but it is rare. When it does occur, the patient’s physician must recognize that the new weakness of seemingly recovered muscles does not necessarily indicate a second attack of GBS. [/I]
[I]For many patients recovering from GBS, residual motor or sensory deficits may be only one aspect of the long consequences of the disease. Other issues described here may have a considerable impact on their quality of life. Effective treatments are available for most of these problems.[/I]
[SIZE=2][I]References available on request. [/I]

[I]Contact Dr. Kleopa at: [email]kleopa@mail.med[/email] upenn.edu[/I][/SIZE]

====================================================
Also, go to the following website, take note of the first case study towards the bottom of the article.

[url]http://www.jsmarcussen.com/gbs/print/residual3.htm[/url] (copy and paste)

[QUOTE=kiwi]:( I went to the neuro and asked first of all if they had had experience with post GBS. She gave me a smile like I was a 48 yr old child and the nightmare began. To sum it up she asked alot of questions about the symptoms and then gave me the typical check on reflexes and strength, then told me I was depressed and should take anti depressants for the rest of my life or untill I get better……..(this is the short version). I told her there was no point checking my strength as GBS has effected my stamina, she noticed my reflexes aren’t so good in my left side, foot and elbow but said nothing. I told her I was unhappy and in pain and frustrated but as my life is full and rewarding and that depression was was not the answer. She said try the drugs she thought I would see an improvment over the next 4 to 6 months.
Any more advise from the board is much appreciated as I have now come to a stand still.
Thanks for all your advice so far and have a great Xmas and happy New Year. I’m going to light the BBQ and have a beer[/QUOTE]

Kiwi,

I see you haven’t posted for a while…

Reading between the lines, it sounds as if your neuro wasn’t much help to you. I don’t know how many hospitals there are in Christchurch, or neuros, but you could consider a second opinion. Shopping for doctors who understand what you need is something we don’t think of with our “socialized medicine” – we tend to just obediently go where we are sent. Ask around, contact the local university’s neuro department, or better yet, go out there for a visit. Ask some questions; outline your concerns. Find the neuro in Christchurch with the greatest amount of experience with GBS. Seek him/her out for more advice. Take a friend/spouse with you for moral support, and an extra set of ears and eyes. Good luck and keep us posted!

Cheers

hs