Residuals 10+ years post onset???

[FONT=”Comic Sans MS”][/FONT] At age 68, I am 44 years post GBS but I would say that, for at least 20 years, I did not experience any symptoms severe enough to cause me to even wonder if there was a problem. There was a lot less information available then so even when I inquired through the Foundation in 1992, I was told there was “no such thing.” My actual question was if there was a “post GB syndrome” as there is a post-polio syndrome. Now in GBS it’s called “residuals.”

With 15 more years to my life and learning, I am very careful about not overdoing it and about not going out where there are crowds in the winter, especially if it is a bad flu and cold winter. I use a manual wheelchair when going out to malls, a park or anywhere where I have to stand for a while or walk very far. Whether this is connected to GBS in any way I have no idea. It is caused by the fact that I have three separate back problems: degenerative disc disease, osteoarthritis and two fractures, apparently not from osteoporosis. I have several pinched nerves, that can be very painful when they act up, and neurological pain, in my feet in particular. My feet and legs are numb, my hands are very weak and I tire easily. I get up at 5:30 a.m., lie down for half an hour around 12:30, and go to bed at 9. This seems to work well for me. The only medication I take, other than a blood pressure pill, is Ibuprofen – one, 3 times a day, unless the pinched nerves are bad, in which case I double the dosage.

On the positive side, I learned how to wind surf at age 50, something I wouldn’t have tried if I knew then what I know now. I make all my own greeting cards, do scrapbooking, “exercise” every day, keeping in mind my limitations and energy levels, and do a lot of volunteer work. I couldn’t imagine my life being any better than it is right now! I am very grateful for the lessons of this experience and for the many opportunities I have to had to talk to and learn from others in the same boat. I wouldn’t change anything.

MDK

[FONT=”Comic Sans MS”][/FONT]
One thing I forgot to mention is that I take a lot of vitamins. Specifically related to GBS residuals, leg and foot cramps – I take magnesium, calcium and vitamin E. I also take B-complex, selenium, folic acid, vitamins C and D, Canadian ginseng, Omega, garlic, beta carotene and co-enzyme Q-10. I get through the long winters usually without even a cold and. in spite of not taking a flu shot, without the flu either. MK

Sylvia –

I’m only 8 years post GBS onset – but I just started having problems with residuals in the last couple of months, no symptoms that I recognized as a problem before this for almost 8 years. I’ve been asking questions here, and many people who are more than 10 years post GBS have told about their post-GBS symptoms.

I’m seeing my neurologist again tomorrow – we had a mix-up in communication, so I haven’t heard from him yet since he ran tests a month ago, except a phone message to say that the tests were “fine”. He’s already told me that he doesn’t believe there are any post-GBS residuals (actually he just stated “it can’t have anything to do with the GBS”), so I don’t expect to end up agreeing with him, unless he can show me that there’s definitely something else going on besides “stress and depression”! I want to make sure there isn’t something else I should be treating.

My symptoms – nerve tingling, some twitching, kind of a cramping, vague pain in my lower legs and arms, a slight sense of weakness. Tingling in my mouth and a numb tongue. Lots of fatigue. The worst of the nerve stuff went away after about 2 1/2 weeks, still some when I overdue it, still learning to sleep & rest more for the fatigue.

I did start taking supplements when I got sick again this time (I have been sporadic through the years with them). A very complete potent multi-vitamin/mineral supplement, extra B-complex, co-Q10, EPA-xtra Omega-3s, and an Acetyl l-carnitine & Alpha-lipoic Acid combo. Oh – and a fizzy C drink & digestive enzymes when I remember. I can’t really claim whether they have a definitive impact on my symptoms, this is all so new to me – but I do think so. I’ve also taken more Advil in the last couple of months that I had in the last couple of years, I think…

Chris

Sylvia,

I too had GBS in 85, with plasmapharesis. I like the way you worded it when you said … [I]”complete recovery” meant you walked again[/I]. Unfortunately, I think the same is true with many doctors still. Not only that, many seem to ignore it in the hope it goes away when some people have “a milder” case – as if there is such a thing!

Not only GP’s, but hometown Neurologists dont want to admit that there is such a thing as [B]Post GBS[/B], regardless of what some research has shown what happens decades later. The neurologist I went to told me that there is no way it was post GBS as once you have recovered, you ARE recovered and one doesnt have residuals and its almost impossible to get it again (A few months later I hand delievered a pack of info to her with quite a snotty letter and some research papers). A friend of mine is a nurse and without me knowing, asked a neuro in the local hospital about post GBS, he said that it was highly unlikely because its so rare …… AAAAAAAAAAAAHHHHHHHHHH! Do I even need to answer that?? :rolleyes: Fibro was also thrown around by my Rheumotologist, actually what he said was something like [I]you show symptoms of Fibro. [/I]

Long story short, the last few years have been horrible .. tingling, weakness, total fatigue, pain etc. I now have a family practitioner who is willing to listen, which takes a weight off my heart. I am on 60ml Cymbalta twice a day and it has done WONDERS for me!! I am also on Provigil, which Im trying to wean off …… Not only do I hate taking pills, but both those are sooo expensive, so if the Cymbalta does wonders at my new dosage of 60ml x 2 a day, they hoepfully i dont need the Provigil anymore.

P.S. I am a key note speaker at a conference for docs and nurses for the INOVA hospital system (N.Virginia) in September. I dont know how I am going to explain to so many skeptics that there is such a thing as Post GBS. When I was contacted, the lady told me she had asked a Psychiatrist to speak about the ‘effects’ of GBS, he replied that it was an acute illness from which you recover fast so there wasnt really anything to speak about :confused: Boy, if he knew what many of us knew he wouldnt be so flip!

[QUOTE=maureendk][FONT=”Comic Sans MS”][/FONT]
One thing I forgot to mention is that I take a lot of vitamins. Specifically related to GBS residuals, leg and foot cramps – I take magnesium, calcium and vitamin E. I also take B-complex, selenium, folic acid, vitamins C and D, Canadian ginseng, Omega, garlic, beta carotene and co-enzyme Q-10. I get through the long winters usually without even a cold and. in spite of not taking a flu shot, without the flu either. MK[/QUOTE]

Pl. dont take lot of vitamins. these vitamins you can get in natural way. Take fibre fruites, geen leafy vegetable,egg,Milk & Fish where you will get all vitamins in natural way with no side effect. Life is very priceous better avoid to take any supliments.

[QUOTE=ali]Sylvia,

I too had GBS in 85, with plasmapharesis. I like the way you worded it when you said … [I]”complete recovery” meant you walked again[/I]. Unfortunately, I think the same is true with many doctors still. Not only that, many seem to ignore it in the hope it goes away when some people have “a milder” case – as if there is such a thing!

Not only GP’s, but hometown Neurologists dont want to admit that there is such a thing as [B]Post GBS[/B], regardless of what some research has shown what happens decades later. The neurologist I went to told me that there is no way it was post GBS as once you have recovered, you ARE recovered and one doesnt have residuals and its almost impossible to get it again (A few months later I hand delievered a pack of info to her with quite a snotty letter and some research papers). A friend of mine is a nurse and without me knowing, asked a neuro in the local hospital about post GBS, he said that it was highly unlikely because its so rare …… AAAAAAAAAAAAHHHHHHHHHH! Do I even need to answer that?? :rolleyes: Fibro was also thrown around by my Rheumotologist, actually what he said was something like [I]you show symptoms of Fibro. [/I]

Long story short, the last few years have been horrible .. tingling, weakness, total fatigue, pain etc. I now have a family practitioner who is willing to listen, which takes a weight off my heart. I am on 60ml Cymbalta twice a day and it has done WONDERS for me!! I am also on Provigil, which Im trying to wean off …… Not only do I hate taking pills, but both those are sooo expensive, so if the Cymbalta does wonders at my new dosage of 60ml x 2 a day, they hoepfully i dont need the Provigil anymore.

P.S. I am a key note speaker at a conference for docs and nurses for the INOVA hospital system (N.Virginia) in September. I dont know how I am going to explain to so many skeptics that there is such a thing as Post GBS. When I was contacted, the lady told me she had asked a Psychiatrist to speak about the ‘effects’ of GBS, he replied that it was an acute illness from which you recover fast so there wasnt really anything to speak about :confused: Boy, if he knew what many of us knew he wouldnt be so flip![/QUOTE]
If you research Polio and Post Polio you will see the same battle that Post GBS’ers that do have Post GBS fight, more and more research is showing the effects on axons and damage done. When you say Post Polio now most doctors know what your talking about–this took decades to accomplish and to this day I’m sure there are Doctors out there that DON’T believe in Post Polio as a matter of fact it took till 2003 for Social Security to reconized Post Polio–DI 24580.010 Evaluation of Postpolio Sequelae

A. BACKGROUND

On 7/2/03, SSA published SSR 03-1p, “Titles II and XVI: Development and Evaluation of Disability Claims Involving Postpolio Sequelae.” This Ruling is published in its entirety in DI 24580.010 and replaces the previous text, “Evaluation of Late Effects of Poliomyelitis.”

Wouldn’t it be great to see a Evaluation for Post GBS too,well maybe it could happen some day. If you ever ask a doctor about POST GBS maybe you should ask them their thoughts on Post Polio then ask what is the differance in the Axon damage. God bless–Dan

Dan,

Whenever I speak to the doc’s I always mention the Post-Polio ‘likeness’ (for lack of a better word), Ds. Perry and Merkies articles regarding the post polio similarities. You are right, some still dont recognise post polio. Your suggestion to mention the similarities between that of post polio and post GBS is a really good idea. In August I will be starting to get a slide presentation together, I may just call on you for some help if thats OK.

Hello,

This is my first post here. I am recovering from GBS since the end of March beginning of April. There has been a lot of helpful information here for me, but then I read about residuals, etc. and that’s a little scary. I am an RN and knew about GBS from taking care of patients and always told them it would go away. I know it takes a long time to recover and when I am frustrated or depressed about my lack of progress I think back where I was and where I am now. BUT, I was really thinking it would all be gone at some point. My main challenge now is walking and balance and my sense of joint space, as well as terrible fatigue. I have become the nap queen, but feel better afterwards. At what point does someone say, wow, it’s all gone? Or does that ever happen? Other than what I have mentioned, I’m doing great. And as I tell folks, my new motto is it could always be worse. I found I’m very blessed to have so many people who care about me, and realized what’s important and what can wait:)

hi gab & welcome,

being the nap queen is the best thing you can do to make a speedy recovery. but w gbs, speedy is measured in months & years. listen to your body, it will tell you what it wants, how it is doing, & how it is. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=ali]Dan,

Whenever I speak to the doc’s I always mention the Post-Polio ‘likeness’ (for lack of a better word), Ds. Perry and Merkies articles regarding the post polio similarities. You are right, some still dont recognise post polio. Your suggestion to mention the similarities between that of post polio and post GBS is a really good idea. In August I will be starting to get a slide presentation together, I may just call on you for some help if thats OK.[/QUOTE]

Here is some info for yur slide presentation that maybe you could use?

[url]http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15543551&query_hl=11[/url]

[url]http://www.jsmarcussen.com/gbs/print/fatigue.htm[/url]

[url]http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15668421&query_hl=11[/url]

[url]http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15546603&query_hl=11[/url]

Sylvia,

I believe at 40 I am both. Thanks for that, I had a good giggle – in a very mature, thoughtful way;) .

[QUOTE=sylvia’85]Hey Dan, the NCBI links wouldn’t come up for me. What were the titles of the articles you found?

Ali- I just sent you a PM:)[/QUOTE]

: Muscle Nerve. 2005 Jan;31(1):70-7. Related Articles, Links

Electrophysiological signs of permanent axonal loss in a follow-up study of patients with Guillain-Barré syndrome.

Dornonville de la Cour C, Andersen H, Stålberg E, Fuglsang-Frederiksen A, Jakobsen J.

Department of Neurology, Aarhus University Hospital, Nørrebrogade 44, 8000 Aarhus C, Denmark. [email]lacour@akhphd.au.dk[/email]

The neurophysiological mechanisms for persisting impairment of motor function after Guillain-Barre syndrome (GBS) were assessed in 37 unselected patients 1-13 years after diagnosis. For evaluation of reinnervation and axonal loss, macroelectromyography (macro-EMG) including measurement of fiber density (FD) was performed. Data from neuropathy symptom score, neuropathy disability score, nerve conduction studies, and quantitative sensory examination were ranked and summed to a neuropathy rank sum score (NRSS). The isokinetic muscle strength at the ankle was measured. Signs of axonal loss with increase of either macro motor unit potential (macro-MUP) amplitude or FD occurred in 76% of patients. The macro-MUP amplitude correlated with muscle strength and with NRSS. Patients with evidence of residual neuropathy had increased macro-MUP amplitude and FD as well as decreased muscle strength compared to patients without evidence of residual neuropathy. We conclude that axonal loss takes place in a substantial number of GBS patients and is associated with permanent muscle weakness caused by insufficient reinnervation. Possible patterns of pathology are discussed in relation to the macro-EMG findings.

PMID: 15543551 [PubMed – indexed for MEDLINE]

1: Neurology. 2005 Jan 25;64(2):246-53. Related Articles, Links

Residual neuropathy in long-term population-based follow-up of Guillain-Barré syndrome.

Dornonville de la Cour C, Jakobsen J.

Department of Neurology, Aarhus University Hospital, Noerrebrogade 44, 8000 Aarhus C, Denmark. [email]lacour@akhphd.au.dk[/email]

OBJECTIVE: To estimate the occurrence of residual neuropathy and its self-reported health consequences in a population-based group of patients with Guillain-Barré syndrome (GBS) and to characterize quantitatively the concomitant motor, sensory, and autonomic impairments. METHODS: Forty patients (mean age 46 years) with a confirmed diagnosis of GBS were studied a mean of 7 years (range 1 to 13 years) after the acute attack together with 40 healthy control subjects. The Dyck minimal criteria of neuropathy, the Neuropathy Symptom Score, the Neuropathy Disability Score, the Short Form-36 (SF-36) generic health questionnaire, isokinetic dynamometry at ankle and wrist, quantitative sensory testing of thresholds for vibration, cold, and pain, autonomic function tests, nerve conduction studies, and a summed Neuropathy Rank Sum Score (NRSS) were applied. RESULTS: Nineteen patients (48%) had residual neuropathy, which was independent of follow-up time. The patients with GBS reported lower health status than control subjects on the SF-36 Physical Component Summary Scale (PCS; p = 0.01), and the PCS scores correlated with the NRSS (r = -0.41, p = 0.009). In patients with GBS, muscle strength at ankle dorsal flexion was reduced by 13.9% (p = 0.001), sensory thresholds for vibration were increased in the foot (p < 0.05), and sensory thresholds for cold were increased in the hand and foot (p < 0.05), whereas autonomic functions and pain thresholds were unaffected. CONCLUSIONS: Residual neuropathy affecting large- and medium-sized myelinated fibers endures long after the acute attack of Guillain-Barré syndrome in approximately half of all patients, leads to motor and sensory dysfunction, and shows a trend toward impairing self-reported physical health status. PMID: 15668421 [PubMed - indexed for MEDLINE]

[QUOTE=sylvia’85]Hey Dan, the NCBI links wouldn’t come up for me. What were the titles of the articles you found?

Ali- I just sent you a PM:)[/QUOTE]

Abstract

To determine the involvement of the corticospinal tract in Guillain-Barré syndrome (GBS), we examined central motor conduction in patients with GBS-like symptoms and hyperreflexia using a magnetic stimulation technique. The subjects were 3 patients who exhibited ascending muscle weakness 2-4 weeks after preceding infections. Deep tendon reflexes were exaggerated in all four limbs of the 3 patients. The results of cerebrospinal fluid examinations revealed protein elevation without pleocytosis. The serum anti-GM1 antibody titer was elevated in 2 patients. The results of nerve conduction study revealed axonal motor neuropathy and normal F-wave conduction. Central motor conduction time (CMCT) in patients with hyperreflexia was significantly delayed compared to that in patients with GBS and areflexia (p < 0.001), and the delayed CMCTs were significantly improved in the recovery periods (p < 0.001). Although hyperreflexia is a controversial symptom in patients with GBS, these findings indicate that there is functional corticospinal tract involvement in patients with a GBS variant. Copyright © 2001 S. Karger AG, Basel -------------------------------------------------------------------------------- Author Contacts Takao Mitsui, MD First Department of Internal Medicine, School of Medicine University of Tokushima, Kuramoto 3-18-15 Tokushima 770-8503 (Japan) Tel. +81 886 33 7120, Fax +81 886 33 7121, E-Mail [email]tmitsui@clin.med.tokushima-u.ac.jp[/email] --------------------------------------------------------------------------------

Hi Sylvia,

I’m just a few months over 10 years post. I did not have any treatment and since I could walk (barely though) I was sent home with Neurontin. I didn’t drive for a few months, had to crawl to get myself in the bath to turn the shower on me, rolled sodas out of the frig but couldn’t get them open, and on and on my story goes.

I usually describe what I have been through to people who don’t know what in the heck I had is that it was like MS hit once and went away but left damage. I know MS is totally different, but people seem to sort of understand. I strongly believe the majority of us are changed permanently – some for the better with attitude and acceptance of life.

I was 39 when I got sick and am now looking at 50 around the corner. I think a combo of getting older and a damaged body is what I feel. I have been doing a little bit better the past few months with taking some mega vitamins with lots of B12, and I’m also taking vitamin C. Carolyn on this forum is very knowledgeable about vitamins and supplements – you could probably PM her. My last visit to a neuro a couple of months ago showed my b12 was almost deficient, the emg/ncv must have not shown anything major except nerve damage to my wrists and I left with a diagnose of sensory polyneuropathy and carpal tunnel – I’ve been a secretary all my life, so go figure. Oops, I’m getting a yucky attitude here, sorry. Most of us go to doctors leaving very frustrated as they never seem to understand. I have even been to a therapist who I have known for 25 years and he wanted me to file for disability due to the fact my personal life is extremely limited.

Oh, you didn’t want a book did you? Just let me know if I can help you with more info or anything!

[I]Edit: I still don’t have any reflexes. My balance is horrible.[/I]

I had GBS 10 years ago… I had IVIG treatment.
Now just lately I have noticed Tingling in legs, arms, fingers and even mouth.
I have been under stress (work for almost 2 years…long story there and then I started thinking back at the first of the year I thought had some other medical problems) Any problem I feel like I am running to the doc. , because I didn’t at first with GBS.
Any way other Medical Issues must be in my head.
I am taking B12, Multi Vit and Vit C. I just stated to take them.

Parker0507/jb

Hi Sylvia, I am post 18 years GBS. The only treatment I received was an IV steroids (sent home on oral steroid). I had to learn to walk again and have never really regained by balance or stamina and I can not hold my arms over my head for very long (makes trying to fix my hair a chore). I developed a lot of food/pet/medication allergies that I have never had before and weak lung capacity, I now have asthma and I can no longer swim/run/jog/laugh. I have taken many spills and to date have not broken any bones.

I went for over 16 years not knowing very much about the residuals of GBS and at this point I am not sure that learning what I know now has been that good for me 😀 Learning what I know now certainly does explain alot about my “extreme aging”, @ 37 I feel more like 60 but in the same breathe it is nice to know that the reason I am so fatigued is not just because of my lazy gene passed on to me :p I used to get very frustrated that I cant go and do all the things I like because I’m too tired but now I can accept that there is a reason I am no longer superwoman. My husband is great about the whole thing, he was there when I got sick and really understands my limitations better than I do!!
I was in an auto accident in 2004 that really seemed to trigger my residuals. Within 9 months of the accident I really began to have problems with my hands being very weak, my feet not being able to go all day, one trip to Wal-Mart and I was done walking for the day. I began to have alot of problems with my left hip….so on and so forth. Quite by accident I began taking a vitamin B supplement and low and behold it made a hugh difference in not only the way I felt but it cleared up these horrible boils I used to get on my face from stress. I take the B everyday, no multi vitamin because the IRON make me ill but I feel like I should maybe be taking something for my bones. I usually get sick several times a winter and it takes me forever to get over it, this year I was only sick once and it only lasted for 3 days, I was taking mega doses of C and Echinacea along with the B. I still have problems with my hip, lots of pain and I have trouble bending down on my left side but an Aleve works wonders, my Dr said to take one Aleve everyday for 2 weeks when my hip flares up on me and it does the trick. I no longer work out but I do walk on my treadmill and watch my weight so I dont make it worse on my hip.

Hi,

I volunteer for the Arthritis Foundation and had an opportunity to talk to the main presenter and head of the Wisconsin Chapter. GBS is listed as one of the Arthritis related diseases, as is MS and Lupus and Fibromyalgia. They all are AutoImmune diseases. In fact, it was published in one of their magazines. When I get a chance I am going to find it. I keep all my magazines. One of my jobs for the NE WI Chapter was to read three grant applications and make a short review of what they are trying to accomplish and put it in words the normal person can understand.

A Fibromyalgia grant will be experimenting with exercises where the muscle moves but the limb stays in place. I forgot what we used to call it, but Yoga is also a simular exercise. I was diagnosed with Fibromyalgia 15 years ago, and I just think it’s a word they use when they don’t really know and want to pasify(sp) a person because they don’t know what it is. I talked to a wife of a Rheumotogist and he doesn’t go along with the use of Fibromyalgia as a real diagnose. That is not saying that a person diagnosed with Fibromyalgia isn’t in a lot of pain, it is just the doctor passes us off.

I was told by a friend and a retired co-worker, said her husband died of GBS and they called it French Polio. So the residuals are really post polio. I had heard GBS called this before, but she said she was told this.

I am only 7 years post GBS and my residuals are bad. The neuroligists didn’t know what to do, so they treated me with steriods. Maybe if they did PP or IVIG, I would be back to normal now, or not disabled.

Judy

Hi Sylvia

Almost fourteen years.
Had seven rounds of plasmapheresis. Took Elvil (had problems with my liver) Neurontin (made me loopy 😮 ) Now I’m taking Lyrica.
Still have numbness and tingling. Pain, bowel problems, high blood pressure, muscle cramping, and no reflexes.

I was at the doctor today. (a new one) they still can’t get over that I don’t have reflexes:rolleyes: duh!
“how long have you had this?” duh!!! 14 years
“bowel problems?” duh!! 14 years!!!!!!!!!!!
all of the above 14 years!!!!:eek:

Hi Sylvia, GPS DEC 96, which gives me 10 years experience at residuals. What did I win?

Residuals: Depression and chronic fatigue, shortness of breath, neck cramps, decrease in feeling on the left side of my body, lower left lip out for the count (glad I don’t play the trumpet), pain in feet now and then (so much for my Chip and Dales dancing career), paranoid when it comes flu season, left eye seems tired most of the time, which is why I tend to wink at pretty girls. That’s about it.

/me wonders what I won

Dr. Richard Bruno conducted studies on post-polio symptoms and worked with SSA to identify criteria for providing SSA services to post-polio patients. He went on to begin studying people with GBS who experience increased symptoms years after the original disease. He is published in New Mobility Magazine and when I corresponded with him about seven years ago, offered an evaluation program as well as therapies and patient education on increasing quality of life with post-polio symptoms.

Thank you for that Linda! I looked up info on Dr. Bruno and also found a Dr. Nancy Frick who seemed to do studies on post polio and chronic fatigue syndrome. Its amazing what they say about 75% of Polio survivors having problems. I wish a doctor would be passionate about doing research on us and what we deal with many years later.

[QUOTE=gab111]Hello,

This is my first post here. I am recovering from GBS since the end of March beginning of April. There has been a lot of helpful information here for me, but then I read about residuals, etc. and that’s a little scary. I am an RN and knew about GBS from taking care of patients and always told them it would go away. I know it takes a long time to recover and when I am frustrated or depressed about my lack of progress I think back where I was and where I am now. BUT, I was really thinking it would all be gone at some point. My main challenge now is walking and balance and my sense of joint space, as well as terrible fatigue. I have become the nap queen, but feel better afterwards. At what point does someone say, wow, it’s all gone? Or does that ever happen? Other than what I have mentioned, I’m doing great. And as I tell folks, my new motto is it could always be worse. I found I’m very blessed to have so many people who care about me, and realized what’s important and what can wait:)[/QUOTE]
gab111 I was very interested in what you had to say. I wish you well in your recovery. I am 3 years out of my GB epsode. I recovered almost total upper body mobility, but the bottom half is still paralysed, but with exercise and a positive attitude, I feel some day I WILL walk again. Numbness is still all over ,my body, but the total DEAD feeling is limited to the lower half, so there has been a lot of recovery, as I look back from where I was. Good luck, Carol

Hi everyone! I am new here but had GBS 31 years ago when I was 19 and pregnant. My paralysis was total…..I spent 10 days on respirator in intensive care at Johns Hopkins. Overall I spent 4 months in hospitals and took out patient therapy for 3 months afterward. Hopkins was one of the few hospitals studying GBS at that time. I was told that I would “be fine” but suffer from residuals the rest of my life. For over 20 years I was almost normal. I would get tired and sometimes get hoarse or have some tingling iin my feet and hands, but that was about it. In 2004 however I began to get severe tingling in my feet, a tremor in my hands and arms and suffered exteme fatigue. I also had the sensation of vibrating while I was laying still. My MD thought I might have MS and I went to a neurologist. After nerve conduction studies on my arms and legs, she determined that I had damage from the GBS and also had symptoms of a hereditary neuropathy. I too asked about a post polio type of syndrome. She said it was possible. I did my own investigation and came accross different studies of GBS from around the world. What I found was what I had always thought was true: most people who had GBS had “residuals” throughout their lives and seemed to get worse as they got older. I also found an Italian study that believed that there were actually three categories of GBS………….being acute, chronic and recurring.
I believe that the residuals are actually cases of recurring GBS. When I am tired, stressed or ill, I suffer flare ups.

I hope this helps, but as with all of you, I know the frustration of having such bizarre symptoms. My neurologist never heard of anyone felling like they are vibrating while laying still. Well, she has now.

Yes, I am post 28 yrs and had small problems up to a year ago and started having major problems. All the nurologist said was all the test are normal but during that time I was printed articles about Residuals and showed him and he agreed that had to what was happening to me. I had a very unusal thing to happen. I had been having to stay home from church with my mother-in-law and when she was in the hospita, I was able to go. Toward the end of the service and I was getting very tired, it felt like my whole body was rocking back and forth. I wrote my husband a note and ask if I was moving. He said only my head and neck. You figure????? I am very achy and am on Lyrica 150 mg 2 x a day and lortabs for any break through pain.:confused:

Yes, I am post 28 yrs and had small problems up to a year ago and started having major problems. All the nurologist said was all the test are normal but during that time I was printed articles about Residuals and showed him and he agreed that had to what was happening to me. I had a very unusal thing to happen. I had been having to stay home from church with my mother-in-law and when she was in the hospita, I was able to go. Toward the end of the service and I was getting very tired, it felt like my whole body was rocking back and forth. I wrote my husband a note and ask if I was moving. He said only my head and neck. You figure????? I am very achy and am on Lyrica 150 mg 2 x a day and lortabs for any break through pain.:confused:

Yes, I am post 28 yrs and had small problems up to a year ago and started having major problems. All the nurologist said was all the test are normal but during that time I was printed articles about Residuals and showed him and he agreed that had to what was happening to me. I had a very unusal thing to happen. I had been having to stay home from church with my mother-in-law and when she was in the hospita, I was able to go. Toward the end of the service and I was getting very tired, it felt like my whole body was rocking back and forth. I wrote my husband a note and ask if I was moving. He said only my head and neck. You figure????? I am very achy and am on Lyrica 150 mg 2 x a day and lortabs for any break through pain.:confused:

I had GBS 25 years ago without plasmapharesis, now I’m 40. I have had some light sequelas : tiredness, pain etc until six years ago when I got worse.
Now I don’t work anymore. After a lots of examinations included EMG nothing unusual has been found. When I read the Canadian criteria of CFS/ME I have them all. I also have IBS. I feel like 90 years.
The doctor I have now have “describe me” with the diagnoses M791 myalgia, B948 late effect of other specificate infections (Guillain-Barré) and R53 sense of illness and tiredness.
I have tried Amantadine, different painkillers etc. The only one which help me a little is to take a very small dose of amitryptilin.
When I have better and god days I do yoga, breathing exercises and some meditation and daily walks. In winter time I also try do a daily ayurvedic sesamoilmassage. I have changed a lot of my diet to – I prepare all the meals with so much organic stuff I can, I don’t take sugar, white flour etc. But some days when I’m worse I just take something to kill the hunger. I take probiotic yogurt, linseed oil, and some mineral and vitamine liquid supplement. It probably sound boring but I is not that I have much other things to do and it makes me feel better inside but I still have all the problems left…

Sorry about the long story – I’m to dizzy to edit it as a short one…

Anneli

Its good to see you posting again:)

Hello everyone,

What a lot of great, useful information. I am 3+ years post GBS. I too have the fatigue, tingling, numbness, balance and memory issues. I have not yet found a Doctor who will recognize any of my symptoms as something left behind by the GBS. It really is frustrating.

I will see my MD in October and could use some help with trying to describe to her how I feel. I can give her a list of symptoms but feel so frustrated in not being able to adaquately describe how they affect me.

The whole time I am there I feel like they are going down the list, OK female,
late 50’s, post menopasual, overweight, diabetic, depressed….. No one wants to listen or try to understand that maybe, just maybe it is something else that has changed my life so completely. I am not a whiner or complainer I just want to be listened to and understood.

Some weeks ago I heard a story on the news of a family who had taken a their
wife/mother to the emergency room for treatment. Not having insuance they were pretty much ignored. The woman kept getting worse and the staff would not do anything, it seems the woman had been there previously in the week. One of the family members called 911 from the hospital trying to get help. The woman died. How very very sad.

So, give me some help on how to communicate to my Doctors to make them understand. I greive for the person I used to be. I do not know how to be the person this condition has turned me into.
Thanks for listening, guess I am a little lonely today.
Bonnie

Hi friends,

It has been quite a while since I last posted, but came across an article in the Washington Times newspaper that relates to this discussion. I think you can find it as follows:
[url]http://washingtontimes.com/article/20070828/METRO/108280047/1004/METRO02[/url]

In particular, it notes that Post Polio Syndrome is partly the resultdue to the fact of compensation by undamaged axons/nerves picking up the work previously done by the damaged ones, and essentially wearing out more quickly due to overwork. My paraphrasing may not be well done, so it’s best to read the article.

Since this is basically what happens with damaged axons/nerves in GBS, and has been well recognised by Dr. Parry and other GBS experts, wouldn’t it make a case also for there being a post GBS Syndrome?

According to the article, PPS is progressive, becoming worse with age (as do most things), but accelerated by overusing the muscles. Another interesting point made in the article is that people with PPS are coping by exercising less and developing ways to save their muscles (or nerves controling the muscles) from having to work whenever possible, so they can function as long as possible during their lifetime.

If we assume that post GBS Syndrome is similar, what does this mean for those of us who are functioning physically fairly well now? Should we try to concerve our muscles (and nerves) as much as possilble now, so we can function “normally” for longer during our lifetime? Very unsettling thought.

I’d be interested to hear what others think about the information.

Suzanne

Suzanne, This is very unsettling, and Im trying not to jump to conclusions or overreact right now. All I can hope is that because polio is more the muscle side of things, maybe there is a break for us because we relate more to the nerves – I dont know, its a ray of hope. I have often wondered when this hit again at post symptoms years later, what my future would be. Honestly, at 40 I often feel as if I am decades older (or what I percieve a person decades older feels like). What will 50, 60 or 70 bring? What is going to happen if the most doctors keep up with their apathy?

Thanks for the post, Suzanne. I’ve often wondered about those issues but here’s my take on it.

If you (I don’t mean you specifically!) don’t live your life to the fullest that you can now, what will you be conserving it for? Not one of us knows the time/date of our own death. Sure, we may have to face these issues somewhere down the line but life is not a dress rehearsal! We can’t go back to see if it would have worked better “another way”. My husband and I have tried time and again to “study” this disease (GBS) for the “patterns” so we could “do it right” 😀 12+ years later, it’s still different every day. I can garden for an afternoon and be in bed for 2 days, or I can garden for an afternoon, and feel a few twinges for 2 days. Hindsight is the only way to know 😮

I worried my self crazy about what I might have to face, many years back, when I was new at this process. With time, I am learning that I have been given today to live (I use alot of “post-it” notes ~ ha!)

Here’s to living life to all of you 🙂

Judy, you hit the nail on the head!

I am tired ALL THE TIME! Post polio syndrome is the term my neuro mentioned. The best explaination he gave me goes like this. We are over wired, so as we get older and lose a bit here and there, there is backup. When something traumatic happens, you lose a lot of that. It may be a few years before you notice, though.
Pre GBS, you might have been able to bench press 100 lbs. 10 times. Post GBS, you can still bench press 100 lbs., but only 3 times. The fact you can press 100 lbs. is what some quacks..er.. doctors call a full recovery.
Another problem I seem to have is very low levels of testoserone, Vit D3, B12,etc. Everything that makes you feel alive. Does anyone else have this problem?

Having GBS over 30 years ago, I am now 50, I can tell you that there definately is a post GBS syndrome……..or a recurring syndrome. The study of GBS has grown leaps and bounds in 30 years, however much more needs to be done. It is easy to get frustrated and wish that things were different, but it is what it is. For those of us who can walk and live mostly normal lives, we should thank God every day. So many others are in much worse condition. I have managed a business and biked 100 miles a week. Yes I get extremely tired, but I rest and then keep going. I can’t do as much as I did 10 years ago, but I do what I can. As it was explained to me, nerve regeneration slows down as we age and those of us who had GBS are going to have more problems as we age. Maybe one day, GBS will be more understood. By all of us speaking out and informing doctors accross the country, we are helping not only ourselves, but the future victims of GBS.

[QUOTE=Hook]I am tired ALL THE TIME! Post polio syndrome is the term my neuro mentioned. The best explaination he gave me goes like this. We are over wired, so as we get older and lose a bit here and there, there is backup. When something traumatic happens, you lose a lot of that. It may be a few years before you notice, though.
Pre GBS, you might have been able to bench press 100 lbs. 10 times. Post GBS, you can still bench press 100 lbs., but only 3 times. The fact you can press 100 lbs. is what some quacks..er.. doctors call a full recovery.
Another problem I seem to have is very low levels of testoserone, Vit D3, B12,etc. Everything that makes you feel alive. Does anyone else have this problem?[/QUOTE]

I take B12 and B6 every day. It seems to help. I know the tiredness you are talking about. Try 5 or 10 minutes a day of light exercising ( walking, riding a bike) and slowly increase to 20 or 30 minutes a few times a week. It does help. Easy does it though. If all you can do is 10 minutes………it’s better than nothing. Also, if you have access to a pool, aquatic activity is great and is low impact.

Right now I am having muscle pain in my upper back and my feet are “fuzzy”. I am also very tired because I do not sleep well. Anyone else have the upper back pain?

Judy, I love your positive outlook, and I agree with you.

I do wonder however, if we might do our bodies a dis-service (in the long term) by exercising for the sake of exercise (more than required for fun or for maintenance).

Suzanne

Thanks for the welcoming Ali:)

The process of trying to manage to live a decent life with this Post GBS symptoms is really hard.
The fysiological part is what is it – an disaster….But the psycological part – all this thinking around it, the struggle – puh!
Nowadays I’m taking it much calmer. I don’t struggle anymore or at least not always…I’m trying to shut down the intellect and the thoughts – as you do in relaxation and meditation. Otherwise they are using me all the time. Now I try to use them when I really need them – which is like never anyway;). It’s quite nice just floating around for a while…

About exercise. Good point there Susan.
Watch up for physioterapist or other persons who says that your a tired just because you are in a bad shape. I was at a rehabcenter this spring and was persuaded into a fysioprogram which one week later threw me into a nightmare. There are few proffessionals who now how to treat persons with symptom similar to CFS/ME.

I just read your post regarding your years with GBS. I wish you lived near me so we could talk. I am 3 1/2 years into GBS and my bottom half is left numb, tingly, vibrating, useless. I go to exercise classes and now I’m starting therapy again, but I think it’s too late for me. I’m not familiar with this GBS place to write, but I’ll keep checking back in case I get a reply. Thanks, Carol

Carol J,

Please don’t give up. 3-1/2 years seems like an eternity in some ways, and you may hear from some doctors or others that recovery doesn’t happen past this point, but it does.

I will be post GBS 5 years at the end of this December, and although I still do have residuals, I am also still seeing some improvements. Granted, they are smaller and not as frequent now as they were during the beginning of recovery, but definetly improvements still.

Be patient with yourself. Treat yourself like you would treat a friend. Rest when you are tired, don’t let yourself get over committed, avoid or remove yourself from stressful situations whenever possible, eat healthy food, get lots of sleep, do a little exercise, surround yourself with things that comfort your body and your mind, and remember to treat your body with kindness.

There are things about this illness that you cannot change by railing against them, but you can make yourself feel worse by pushing yourself too hard. I don’t mean that you should be complacent and give up or give in- just that you can make better progress, and live more peacefully with the circumstances, by allowing yourself to accept the nature of the illness- relax a little about it, and give your body and mind more time to heal.

Best wishes to you, and I hope you will feel better every day.

Suzanne

[QUOTE]Please don’t give up. 3-1/2 years seems like an eternity in some ways, and you may hear from some doctors or others that recovery doesn’t happen past this point, but it does. [/QUOTE]

Honestly, I have mixed feeling about this kind of positive attitude. Yes, as others above have mentioned, it is good to keep a positive attitude in the sense that others are worse off and there is so much we can and should appreciate in living- GBS residuals for me are much better than being struck by lightning or hit in the head by a falling plane/death. That said, it is also important to accept the reality that residuals may be a mainstay of life post-GBS.

To this effect, I may have coped better during post years seven through ten if I tried to accept certain limitations, as opposed to denying the fact that I have had to make inevitable drastic changes in my lifestyle, that I will have fatigues issues till the day I die! So, yes hope and give thanks, and think about what you can do to make lifestyle changes considering the apparent reality that these issues may not go away after the fourth year of recovery even if you maintain hope for full recovery. What I mean is, don’t set yourself up as I did years ago!

Remember the serenity prayer and try to gain wisdom in that certain things we cannot change. This is not a negative attitude, rather for me, it is positive in that I now try to deal with the realities, as opposed to wishful thinking and avoidance of working within my limitations. Honestly, I may have not come up with a bad case of dysthimic depression if I had worked on this issue of acceptance much earlier.

Hey Rocker,

I agree with you. Positive attitudes are great. However, being realistic I think is important. We both are 10 years post (I think) and with getting older, I know not too much is going to change. Since I am single and have to work, I have to keep in mind to have a job that does not pull too much energy out of me. My current job is beginning to be like this so I am in a big quandry trying to figure out what type of office job would be better for me and still keep a roof over my head.

I do pray for the best for all of us. Let’s keep our chins up!

I can relate, Chrissy. Hey, at least we can still dance :)… then a nap!

I’m bringing this thread back up for some new members with questions.

Hope you all find something that helps!

I have read all these posts with interest and wish to add my contribution.
I contracted GBS in 1990 at the age of 51; my hands never recovered and it took me four years to learn to walk again, despite the doctors telling me it was a waste of time to even think about ever getting back on my feet. From the outset I determined to live life as normal as possible and I have fought GBS every inch of the way ever since. If I had not done so I would never have walked again.
Four years ago my health started to decline and I have been diagnosed with axonal degeneration. The difference in the last six months cannot be explained away by the gradual process of getting older. Post GBS is alive and well and living amongst those who have had the illness for any length of time, let no healthy super fit doctor persuade you otherwise.
A year ago I was walking 2 miles three times a week, but today I am struggling to cope with 440 yards. This is not “gradually getting older”, this is the direct result of refusing to give up over the last 17 years, but if I had my life over again I would do exactly the same, because it is our attitude to adversity that makes us the type of person we are.

To the top, especially for WithHope 🙂

[QUOTE]As we age these axions are giving out. [/QUOTE]

Rats! It isthe disease that keeps on giving!

/my musician hands are worried