Can residuals begin years later?
AnonymousApril 25, 2007 at 12:41 am
Hi! I’m basically new to the forum (I was registered in the old system, but have just re-registered here again now). I have a question about residuals. I’ve tried searching the forums for others’ experiences, but I haven’t been able to answer my question yet that way, so I thought I would try just asking.
First – my story: I’m a woman in my mid-forties and I had GBS 8 years ago. I was lucky to only have mild symptoms. My symptoms started a few days after having the flu, and progressed rather slowly – at first, I thought I had just strained my back and thumb, etc… After about 10-12 days of increasing symptoms, my chiropractor noticed I had foot drop and told me to see a neurologist – I ended up at a GP a few days later (by then I was just weak enough that I couldn’t step up on a curb, and I had a hard time lifting my one-year-old), and they sent me to ER. In ER I was very lucky to get a neurologist who recognized the GBS immediately, admitted me, ran tests, and I was getting plasma-pherisis within a couple of days. After only about 7 days in the hospital, I was sent home. I recovered quickly – never even needed PT.
After a few weeks of building my overall strength back up, I have experienced practically no residuals that I could identify as from the GBS, besides an occasional “funny feeling” in my lips and possibly some fingers when I was battling a cold or the flu.
Until the last couple of weeks. After a series of major life stresses, I am once again experiencing some of the symptoms that I remember from GBS. It is not consistent every day or all day – but I am having bouts of deep fatigue, various degrees of mild tingling and aches in my lips, hands, and feet, and some weakness in my arms and legs, and overall aching that seems to come from the fatigue as much as anything else. It has gotten slowly a little worse – but not progressed at anywhere near the same rate as when I had GBS 8 years ago (which wasn’t very fast, to begin with). I have worked hard to take care of myself these last few weeks, though (lot’s of rest and vitamins, gave up most coffee, etc…), and that’s different than last time, too.
So – I’m wondering if I am possibly getting GBS again (or would that possibly be CIDP, then?), or whether it is possible to only begin to experience residuals after 8 years of being virtually symptom free? This is the question I couldn’t quite gather from my searches in the forum – whether other people had possibly experienced being symptom free for years, then began to experience residuals? Or would that necessarily be a new GBS attack, after all these years?
Thanks so much for any help! I’ve got an appointment with my GP tomorrow, I thought I would start with her before going to the neurologist, so she would at least know what was going on… Plus, it’s a little intimidating to go to the neurologist when my complaints are still fairly vague, at least compared to the last time I needed to seek help.
AnonymousApril 25, 2007 at 6:53 am
you said, ‘After a series of major life stresses’ – that makes me think/believe recessed residuals are coming up to the front burner & a lot of rest is in order. on the other hand you have had almost no residuals till present. if the major rest does not help or you feel accelerating decline, go to a neuro for a ncv in case it is a real gbs attack [i think unlikely, but one never knows]. it is not cidp. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousApril 25, 2007 at 8:07 am
You need to listen to your body and look after No. 1 which means you need to de-stress your life, pace yourself and rest (easier said than done I know, but very important). It’s good your going to your GP early, better to be safe than sorry, at least you and the Doc can keep an eye on the situation. I’m sure you’ll find it’s not CIDP or another GBS attack, think positive and good luck, keep us posted 🙂
AnonymousApril 25, 2007 at 10:35 am
The answer to ‘can residuals begin years later?’ (even if there werent many residuals after the attack). The answer is yes, yes and YES 😉 .17 years for me, dealing with fatigue, and painful feet when walking and exercise were the only residuals I had, and I never knew they were residual in the first place. Short version is ….. after thinking I was getting GBS again, the neurologist saying that I couldnt get it again :rolleyes: and one doesnt suffer residuals after recovering :rolleyes: , I left thinking I was making it all up in my head. Researching articles and joining the forum helped me understand what was happening to me. It is likened to post polio syndrome, which happens years or decades after the initial attack. Here is an article, just copy and past as we cant post links on the forum. Hope it helps in some way.
Are you on the Foundations mailing list? If not, go to the gbs-cidp.org website and register to get information and the newsletters.
AnonymousApril 25, 2007 at 11:39 am
Thanks Gene, Niki, Ali…
I had begun to suspect from reading here that it would not be outside the realm of possibility to start feeling the residuals years later. I’ve re-read the articles by Dr. Parry, and thanks for the link to that other one as well, Ali. I’ve printed all those out to take with me to the doctor this morning, as well.
It’s been hard emotionally in that until the last couple of weeks, I would have said that I was one of those very lucky ones who fell into the statistics of no residuals – plus I’m very much in a caretaker role in my life right now, with sick parents and a sick husband and kids active in school and activities, and trying to work part-time. It feels like my body betraying me, all over again… it’s hopeful, though, that rest and taking care of myself might help and that I’m not necessarily headed down the same road as last time.
AnonymousApril 25, 2007 at 1:34 pm
Well, I saw the GP – she said go to the Neurologist, hopefully I should see him this week – tell them why, and they wouldn’t put me off… My blood pressure is up, as well.
Called the neurologist – first they tell me I can have an appt. in June, then after explaining why and asking again, they give me one in 4 weeks and I’m on the cancelation call list… hopefully things won’t get much worse before I can see him.
AnonymousApril 25, 2007 at 5:46 pm
While you are waiting (im)patiently, get yourself lots of rest, and then some more rest. You might be amazed what a couple of days in bed can do for you. Try to watch a bunch of comedies on TV as the laughing is the best medicine. In other words, keep your chin up and take care of yourself, and you will be okay. Stress is very powerful to the bad or good…
Also, you can check in with us every day if you want – we are here. Oh, and once you see your neuro. they will probably take some blood (which takes time for the results) and schedule a test or two (hopefully EMG/NCV).
(Edited for typo)
AnonymousApril 26, 2007 at 2:10 am
Well I am seeing the neurologist tomorrow morning, after all. I called my GP to ask if she had any other names I could call to see if I could get in quicker, and instead she called my old neurologist and arranged for me to go in tomorrow. I am so glad that I went to see my GP first today!
So I’ll have some kind of those electrical tests done tomorrow morning – the neurologist’s wife is a partner in the office, and she does the tests right there. (I’ve seen the acroynms for those tests that are used here on the forum, but I’m not sure what they stand for, and exactly which test they will do tomorrow.) Then after that the neuro is going to see me, as well.
I’m a little disappointed to hear from the neurologists office that they don’t have any records for patients from 8 years ago, and they are basically treating me as a new patient. What would they do with the records? Destroy them? Put them in long term storage somewhere?
It’ll be interesting to see what he says tomorrow. He was very decisive and fast moving in treating me 8 years ago.
AnonymousApril 26, 2007 at 9:10 am
I am new here and so, so glad I’ve found this group!
Chris’s experience really resonates with me – right down to having a one year-old child at the time of initial onset.
I’m sorry you are “back on the list”, Chris, because it means you’re experiencing residuals, but I’m glad you shared your story, because I’ve been feeling rather alone with my random symptoms.
I have learned a lot from reading the posts here and am somewhat dismayed that my neurologist never told me anything about residuals and flare ups. (Also, I told him if he ever tried to do another EMG on me, I was going to clobber him. So maybe he’s decided not to tell me anything anymore.)
I have been experiencing residuals since December (after a cold) and my GP has suggested putting me on neurontin.
I hope all goes well at your dr. appointment, Chris.
AnonymousApril 26, 2007 at 9:31 am
Kelly – Tell more! How long ago did you initially have GBS? What’s happening now?
gene or anyone – can anyone tell me what “ncv” stands for? Thanks.
Edit to add: Nerve Conduction Velocity (I love google 🙂 ). I think this is all they did 8 years ago, actually, I’m not sure if they even did the EMG part… my memory’s not so clear though. I’ll see what they chose to do today…
AnonymousApril 26, 2007 at 10:03 am
I was finally diagnosed in May 2006, but started with random symptoms in mid April.
I presented atypically and had everyone confused and some folks scared. My progression: Coccyx, feet, hands, face, voice, top of the head. Inflammation in the eyes, as well, which I was told was a “by-product of some sort”, and which persist to this day. Everything seemed to clear up (except the eyes).
Then in December I came down with a cold and the back pain and tingling started. I’m still experiencing the pain and tingling – hate the pain, but the tingling sometimes tickles (it roams all over my body and occasionally gets me on my funny bones).
Surely NCV stands for Quit Shocking Me! – maybe in Latin? : )
AnonymousApril 26, 2007 at 3:45 pm
Well – they did the ncv/emg stuff (so much fun!)… no major nerve damage to see. I think she said “very little for having previously had GBS”.
This neuro believes what I’m experiencing is not related to GBS. I’m not sure what I think about that. But while I’m actually feeling pretty well today, and test with strong muscles – he’s not telling me what I’ve been experiencing isn’t real. He’s going to run blood tests and do an MRI, he wants to rule out other issues like possibly MS… So, we’ll see what happens. At least there isn’t active identifiable nerve damage happening right now, that’s a relief.
AnonymousApril 26, 2007 at 4:28 pm
Yes, those tests are so much fun (NOT). I am 10 years post and went to a neuro recently who did all that and a bunch of blood work – some of which I am still waiting on the results. But he did tell me I was on the low side of Vitamin B. So I have started taking some great vitamins/supplements with B12 and such in them, and have to say I think I am feeling better. Maybe this is something you can ask about next time you go back.
Also, I have heard that drinking diet sodas have given many people symptoms like MS. I heard this through an email so I have no idea how truthful it is, but I thought of it when typing this to you.
AnonymousApril 26, 2007 at 6:02 pm
Chris and Kelly
This is a post by DavidBod, who is a doctor from England. I just love what he says here, because I admit that I never really believed that nerve tests gave a ‘true’ reading, but it obviuosly is good to guage certain things
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
Chris, a great many doctors do not admit that there are post GBS symptoms years and years on. I think it is very non-specific, but if other things have been ruled out, then often the only conculsion that can be made is post GBS. Unfortunately thats pretty much how it turned out for me – and still they dont want to admit that post GBS is actually out there.
AnonymousApril 26, 2007 at 8:02 pm
Thanks, Alison – I don’t know much about the nerve tests, so that’s good to read.
I guess I assumed that if there were definitive present damage happening that ought to have prompt treatment again, that SOMETHING would probably show up in the EMG/NCV tests? Or do you think that’s what your quote meant – that not even necessarily anything would show?
I’m figuring that having post-GBS residuals (that the neuro won’t believe are possible) are still a good possiblity of what’s happening to me. But I’m also happy to have other things ruled out now, in case there is some other condition I should be attending to and before I might have to question with the doctor his statements about what is and isn’t possible.
AnonymousApril 30, 2007 at 12:02 pm
Chris thank you for starting up this thread. This has been a question/issue in my mind as well. Although I am not as far out as you. I hope you find some relief.
Alison thank you for the address to the article on residual affects of GBS. That explains and validates so much of what I’m experiencing with. It’s really hard for me to come to this forum–as much as I learn it’s also very hard for me to read–too much of a reminder. I am ususally crying when I’m on this site, even when I read the suscess stories. I still struggle with depression from what happened and how much it’s changed my life. I’ve had to make so many concessions in my life due in large part to the residual damage. This is not all bad but it’s a constant reminder of what happened to me.
I’m at the one year mark and most people I know seem to expect me to be back to how I was before GBS. I’m not, I’m still very affected by fatigue. In fact it seems to have more of a presence in my life now than when I was 3 months out. I have pain and fatigue. The fatige is the worse part of it, and this usually precedes the pain so I get my warnings and then it’s just a matter of do how much do I want to hurt. I’m stuborn and don’t always stop right away when I feel fatigue.
The most frustrating thing is how unpredictable it is and how fast I can go from feeling fine to totally bonking (a cycling term), i.e. crashing. It was good to read an article that validates this expereince.
Has anyone ordered/read the GBS book that recently came out? I got a flyer about it in the mail, it may have come with a newsletter, I can’t remember? I’m going to look for it, I think I’m ready to peek inside and see if there’s more I should know about. Sometimes GBS really bites. Sorry this is not my best day.
AnonymousApril 30, 2007 at 12:57 pm
Kathleen, I hear you! I am 2 1/2 years post GBS. There have definitely been better times. Seems like there are many triggers that will set any one of us off with the residuals, but the fatigue factor runs through out the threads and posts. Can’t seem to shake that one.
It’s okay to have ‘down’ days. But I feel we don’t have to look too far to find someone in worse shape than we are; people who don’t even know what GBS is.
Take care, there are better days ahead.
AnonymousApril 30, 2007 at 1:35 pm
Thanks Jay Dee. No doubt you are right, there are many others much worse than me. I have much to be grateful for and I often say to myself that if this is as good as it gets then it’s good enough. And I mean it. I’m a million times better than I was a year ago.
Having said that it’s still very easy for my mind to take over and try to convince me that I can do what I use to be able to do prior to GBS and then my body actually tries to do so. It’s very subtle, I don’t actually hear the conversation of my old thinking I only know it’s happened once again when I find myself disapointed and frustrated because my body is betraying me or so it feels as if that’s what’s happening. In reality I’m expereincing residual damage and I can’t afford to go through my life unconsicous to the subtle and not so subtle messages my body is sending me.
That article really helped validate my expereince.
Another day, another lesson (re)learned 😉
AnonymousApril 30, 2007 at 4:45 pm
I’m pretty lucky myself, and I always feel bad for complaining. I’m trying to have a positive attitude during a current bad patch. Thus, I’ve decided to get some enjoyment out of the residuals. So when I was bored to tears in a web demo at my job, I allowed myself to be distracted by my arm slowly going numb. (Yes, it’s weird, but it was much more interesting than the web demo.)
AnonymousMay 1, 2007 at 1:49 am
Hi Kathleen – Thanks for joining in… I know what you mean about it being emotional to read other people’s stories.
I really appreciated your description of how the fatigue comes first, kind of a sign that more might come if you don’t slow down. I’m still trying to piece together what’s going on with me that this stuff has come up again after almost 8 years of feeling fine – and this recent stuff definitely began with fatigue. It’s not that my symptoms are all that bad right now – just so clearly not “normal” for me, if I define normal as the last 7 1/2 years. I suspect once you’ve had GBS and experienced the neuropathy, you just KNOW what that kind of thing feels like…
I’d love to hear more stories from anyone dealing with moderate long term residuals. Do the problems come and go? If so, is fatigue what you notice first? If you rest, does it slow down the progression and prevent “hitting the wall”? Are you getting overall worse through time, or does it stay about the same?
Kelly – Oh my gosh – thanks for the smile!!! 🙂
AnonymousMay 1, 2007 at 9:36 am
I don’t seem to be able to feel the fatigue. So it’s the pain I feel first. I may be an anomaly.
I’m interested, too, in other folks’ experiences with the onset of residuals – how long the residuals last – and if there is anything that makes them less intense.
(This forum has really saved my sanity. Thanks!)
AnonymousMay 1, 2007 at 10:31 am
The fatigue is what I noticed first. I had GBS/MF about 20 years ago and had some heavy arms and legs but starting about 2 years ago,I am steadly getting worse. If I am up moving around and going places, by the next day I can’t hardly move around, hurting real bad all over and get a bad headache.
I was told by my neuro that as time went on it would only get worse not better.:eek:
AnonymousMay 1, 2007 at 2:47 pm
[QUOTE=AJR]The fatigue is what I noticed first. I had GBS/MF about 20 years ago and had some heavy arms and legs but starting about 2 years ago,I am steadly getting worse. If I am up moving around and going places, by the next day I can’t hardly move around, hurting real bad all over and get a bad headache.
I was told by my neuro that as time went on it would only get worse not better.:eek:[/QUOTE]
AJR. This is exactly what is happening to me after GBS in 1990. I first noticed a deterioration beginning in my physical condition about four years ago, and in 2005 Professor Hughes of Guy’s Hospital London (the UK’s acknowledged leading authority on GBS) diagnosed axonal degeneration. It would appear that very little research has been done into this condition, but more people seem to be suffering from it than is generally realised. From my research on the Internet it would seem that your neuro is correct in his prognosis.
AnonymousMay 1, 2007 at 3:44 pm
[QUOTE=KellyRJ]Is neurontin as good as everyone says? It sounds like a miracle drug.[/QUOTE]
Kelly Neurontin helps block the pain but it is a neurotransmitter blocker. Think about it, it’s not selective in which neurotransmittors it blocks. I had a LOT more cognitive problems when I was on neurontin.
But I will say this it gave me releif that I desperately needed when I was sick. Now the pain level is manageable. I think of pain as a teacher/instructor. I don’t want to mask it with medication if I can just rest and allow it to slowly ease up. Pain keeps me in check from over doing things. Of course I have the luxury of a pain level that is realatively low–not everyone is so fortunate.
I’m not saying it’s a bad drug, rather it’s a powerful medication and it’s not without side effects. It should be respected. But for releif from the pain of neuropathy it did the trick when nothing else could. Thank God for this medicine.
AnonymousMay 1, 2007 at 10:33 pm
Adrian: I am afraid that is what is happening to me. I don’t feel that I healed much after my first six months, but lately (two years after GBS) the pain is worse and my legs are heavier than before-harder to walk than a year ago. Do you have any sources you found on the internet one could read about this? My neurologist said age did not matter and I would never get worse-thenhe told me he didn’t to see me again as he could not help me with my residuals-talk about a double message. My primary care physician is great but knows next to nothing about these things. Thanks, Jeff
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