AnonymousApril 4, 2007 at 11:36 am
I had GBS/Miller Fisher variety when I was 18, which was 20 years ago—quick onset, 3-4 days from first symptom to respirator, full paralysis, on respirator for a month, whole deal. I got most functionality back within 2-3 months, with full eye tracking not returning for 5-6, and had been completely symptom free since. In the past three days, my arms and feet have become pretty totally tingly/numb, a little palate tingling on occasion, no other symptoms. I’ve read online of occasional relapses/reoccurances of this variety, but no info about how common, or known, it is for a FULL reoccurance of the complete paralysis/respirator variety to happen. Any guidance?
AnonymousApril 4, 2007 at 7:57 pm
Hi Brian and welcome.
I often wonder, as I read through these posts, how much is re-occurances of the disease, and how much is the aging population.
On the other hand no one would have predicted the post polio phenomenon 20 years ago, either. We just don’t have many answers. It’s not a high profile, heavily funded disease like spinal chord injuries are.
AnonymousApril 4, 2007 at 10:40 pm
hi brian & welcome,
have you been over doing it lately? or stressed out? then your residuals are acting up & you need complete rest & lots of it. 3% of us will have another real gbs attack, lo odds but much higher than getting gbs in the first place. if you start getting much worse, go to a gbs neuro for an emg/ncv. more than likely it is your residuals. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 5, 2007 at 11:36 am
Thanks, all. I have been extremely busy with a dense travel sched. lately, and had just recovered from a recurring cold that lasted nearly a month. I have an appt today with a neurologist with GBS experience, and I’ll let you all know what I learn. If what I have now is the worst of it (cottony/tingly arms, hands and feet), I can certainly manage–tho the thought of being back on the respirator is rather scary…
AnonymousApril 7, 2007 at 9:32 am
I too had GBS when I was 18, 21 years ago. My story sounds very similar to yours. I was told I had recovered, but looking back fatigue, less stamina than before, and sore feet plagued me, which I ignored for all those years. A few years ago, started getting those funny feelings in my arms, feet and hands. Body weakness a number of times, and debilitating fatigue. – landed up in er once because I had difficulty breathing. I was told by the neuro that once recovered from GBS, there are no residuals and no recurrances! That is when i started doing research because I thought my mind was playing tricks on me. Found out quite a lot about “Post GBS” which happens decades after the initial event. Unfortunately I seem to slowly be getting worse, specially my hands. I have bad weeks, but I know there are going to be some good weeks ahead where I can accomplish a lot before I crash again. Oh what joy :rolleyes: , I never would have believed that at 40 I would feel like this!!!! I’m so against meds, but unfortunately / or fortunately I suppose, I have some that are helping me. I am in no means an invalid, and nobody would ever think there was something wrong when they see me. As vmac spoke about post polio, post GBS is likened to post polio, showing very similar symptoms many years after the original onset.
P.S. Post GBS is not something many doctors/neuro’s want to/can understand or accept
I have some articles I can post on the forum, or send to you via email if you would like, just let me know.
AnonymousApril 9, 2007 at 5:16 pm
howdy all—well, it has been a week and the numbness/cottony/tinglyness in arms and legs has settled in and gotten maybe a bit stronger; I still have full control over all limbs and extremities, I’m sleeping 14 hours or so a day (normally 5-7 for me) and I feel quite weak and weary after a half hour of walking or really being upright at all. Been through the electric-shock-test thing (egr? i forget what it’s called) on thurs which they said did NOT show any obvious nerve damage that they would associate with GBS, but also told me it could be because it’s too early…..my neurologist is recommending I hospitalize myself (blood tests showed no other possible reason for my symptoms, and a scheduled MRI I had to cancel because my insurance didn’t authorize it), but frankly, since as far as I know (correct me if I’m wrong) there is nothing they can do in a hospital that would make me BETTER, I’m inclined to keep trying to do my work (I have desk work that i can do even feeling this way) until I can’t function outside a hospital—and that is far from the case.
I don’t know if he’s just being malpractice-happy, but I certainly will be happier resting at home and getting work done than in a hospital, where I find rest impossible. (During my full-bore paralysis GBS 20 years ago, i was lucky to sleep 4 hours a day……) I am holding out hope that it doesn’t get any worse than this—-this I can manage, though it is unpleasant being so unvital and unenergetic. I also hope that this comes on and goes away like the original GBS/MF rather than lingering for months and/or rest of my life—-but as we know, no one seems to know anything for sure about how any of this will go…..I am very interested in reading any articles on the recurrance topic….this doctor also says “no such thing as residuals”—he says if you are getting GBS again, you are just getting it again, no connection with having had it before….
AnonymousApril 9, 2007 at 9:58 pm
I’m sorry to have got you all excited, I know that you have seen the articles I am about to post.
[B]AJR and Brian,[/B]
You may very well have seen the links that I am about to post, if by some chance you havent, I hope it helps in some small way. Some of these links were literally a life saver to me.
take note of
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. [B]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. [/B]
AnonymousApril 9, 2007 at 10:12 pm
sorry, didnt complete my post.
and last but not least the following, which covers basically what has been covered in the links I have posted, but discusses case studies.
After a few years on the forum, I have spoken to so many who are suffering years or decades later. These links dont cover what we feel in great detail, but having read these articles, I was empowered (for lack of a better word) to find out more, which led me to the Foundation and Forums. This in turn allowed me the access to people all over the world who validated what I was going through. Unfortunately so much was lost when the ‘old’ forum went down, but there were so many stories similar to ours that were told on there – a wealth of information was lost.
AnonymousApril 9, 2007 at 10:57 pm
Ali—What I’m going thru I’d say is far more like “reoccurance” than any delayed effect….I literally had ZERO aftereffects starting from 6 months after my full paralysis episode in 1986-87—none at all….and a fullon numbness arose from nowhere a week ago to severe in hands and feet within a day—the weakness is also totally sudden and out of nowhere (and only comes on it I’m up and walkign around and doing things with arms and legs for 30 min or more). It certainly is acting like a complete reoccurence—tho, God bless, not nearly as severe or quick as first time. (First time, i went from initial symptom—palate tingling—to total paralysis on respirator in 4 days.) Gene, it was hard enough finding a doctor who even claimed to have any experience with GBS patients associated with a decent hospital—what makes you say he’s a danger to me? (With such a weird unusual disease, I can forgive him not being up on the whole “recurrence” phenomenon—especially since this is certainly coming on like “fresh” GBS….)
And is there anything that can be done to “treat” it in a hospital setting, as long as I am still walking and breathing–which fortunately I still am? What can anyone tell me about efficacy of immuno-globolin thereapy? I just don’t want to be in a hospital if it;s not necc…I find it nearly impossible to actually get any good rest in them, beyond it being impossible to manage the details of my work and life…
AnonymousApril 10, 2007 at 9:26 am
ivig works on 70% of gbers. you can get it at home or as an outpatient. much cheaper buying it from pharmacists who sell it than thru the hosp. pre med w 2 tylenol & 2 benedryl. drip rate 150 ml/hr max. any doc who says gbs has no residuals is not knowledgeable. you should have already had an emg/ncv & lp to Dx gbs. where do you live? take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 10, 2007 at 2:47 pm
Gene—I’m going in tomorrow to have some immuno-g therapy. I don’t understand all the other abbreviations you use. I did have something I believe they called an “eng”? “erg”—shocks to my arms and legs to test, I believe, nerve conduction. This was Thurs and they said it did NOT show nerve damage that would lead them to diagnose GBS—but I know what it is…..I think docs are just very slow to think that something is really GBS, espec when they only have “my word for it”—no objective test so far has proven it. I believe I’ll also be getting a “spinal lumbar” tomorrow—which is supposed to be diagnostic in some way?
ANyway, I’ll let you all know what happens in hospital tomorrow. I frankly despise them, and even going to one gives me a nervous feeling I won’t be coming out for awhile—but I still am walking and breathing, no problem, despite continuing numbness…
AnonymousApril 11, 2007 at 8:54 am
DocDavid posted this for one of our members the other day. I admit that I was shocked at what he said as I thought the nerve tests were a ‘sure thing’.
Join Date: Jun 2006
Location: New Forest southern UK
Aimee, no you cannot put strain on sensory nerves or motor neves, the concept does not exist. Muscles fatigue because of delay in removing waste products and in oxygen supply. [B]Nerve testing is very innaccurate and non-specific. There is very little relationship between laboratory based conduction tests and real life function.[/B] You have done very well and may have to accept some residual discomforts. DocDavid
AnonymousApril 11, 2007 at 9:56 pm
it is true that the emg/ncv is not bulletproof. also, unless done by the skilled can easily be misused. but i think its errors in the right hands are minimum. and i think any possible errors fall like the lp in that it may not find something that is wrong [false negatives]. when it does find a prob, it is there. i have talked to neuros who rely solely on the emg/ncv, but never vise versa. guess it’s best to do both & if either shows positive that should be the call. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 13, 2007 at 1:18 pm
Had a dose of immuno-g therapy, against my strong objections was told to stay in hospital overnight to “check for my reaction” (i can’t sleep well in hospitals). Doc thinks I showed some improved strength next day, but to me that’s pretty random—only while actually living and moving around all day can I tell how strong I am. Numbness still the same. no real improvement yet, but no worsening. Probably will be getting two more doses as outpatient in next week.
AnonymousApril 17, 2007 at 4:45 pm
Happy to report the ig does seem to be helping—deterioration totally stopped, numbness down from 4 cotton layers to one–about what it was first couple of days of symptoms—tho I haven’t been up and around enough to fully judge muscle strength, I’m less weary and tired and needing 12 hours day of sleep as well….getting more ig today.
April 17, 2007 at 5:16 pm
I have read your posts and am glad that you are feeling better! Good Luck! Dawn:o
AnonymousMay 11, 2007 at 1:04 am
I dont know what my dad has but he has been totally paralyzed on a vent with his eyes taped shut 2ice. For months on end with all sorts of complications. First time they said gbs, second time they said may be cidp, third time (still happening) they say it must be cidp. Nothing fits or follows the same pattern except fot it starts with tingling and numbness in his hands followed by leg weakness and garbled speech to total paralysis and a vent. We are just hoping it stops here and the ivig and cellcept controls it. I am constantly looking for some logical conclusions and controlling my compulsion to duct tape the neuro to a chair and interrogate him at will.
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