The definition of residual: What is left over
AnonymousMarch 6, 2009 at 1:56 pm
I think that the word residual is the wrong term to use for what many of us experience. The dictionary definition of residual is “what is left over.” To put it simply, the residuals of GBS are the physical symptoms we are left with when the acute phase of the disorder has passed and we are “recovered.” Many of us on this board started having problems years after we had recovered. So are these new problems residuals or relapses? Does GBS ever really leave you?
Just wondering what your thoughts on this might be.
AnonymousMarch 6, 2009 at 2:37 pm
My understanding is that residual damage is the correct term. A relaspe or reoccurance of GBS is something entirely different and there are folks on this board who have subsequent onsets of GBS. The damage: nueropathy, fatigue, etc. that dogs us after GBS is what is left after we recover from this illness.
I started researching nerve damage, healing/repair and found the medical community to be in great debate over this topic. I figure if they (the supposed experts) can’t difinitively explain it it’s hopeless for me to try. I walked away understanding that there are different schools of thought on this issues and that no one really knows.
I find it frustrating trying to explain GBS and it’s aftermath to laymen when I can’t even get a straight answer. It’s a mixed bag and I suspect there are as many outcomes as there are folks who’ve had GBS.
You pose an excellent question “does GBS ever leave you?” since no one knows how it’s triggered and why some get reoccurances or turn into CIPD. I worry that it’s still in me like a titer in my blood or something. I’ve also researched the issue of donating blood post-GBS and even though the Red Cross doesn’t ban it I’m concerned that I could pass it to another person who’s predisposed to the trigger (whatever that may be) that I won’t donate and I’ve cut up my organ doner card.
AnonymousMarch 7, 2009 at 9:03 am
From what I have gathered, true GBS does not turn into CIDP. GBS is when a person reaches “bottom” within 4 weeks of onset of symptoms. CIDP is when it takes 4 to 6 weeks or longer to reach bottom. Sometimes that can even be months or years. Those of us who had GBS are suffering from damage that occurred during our initial acute phase. CIDP is when the disorder comes on slowly and does not relent as easily. From all that I have read and discerned from medical studies, there is a lot of misinformation and often the wrong diagnosis is made. Today many people are treated before they hit “bottom” and it is not apparent which form of GBS they have.
I wish I could find it, but I read a study done in Italy in the late 1990’s that claimed there was evidence that GBS was recurring in many people. Usually the recurring GBS took on a milder form than the initial attack. I had a doctor tell me that there is the possibility that GBS never leaves your system. I still test positive for autoimmunity.
I truly believe, and this is just my opinion, that GBS does not leave you after the initial attack. The “residuals” are brought on by the initial nerve damage, but that there are also recurring bouts of GBS. Whatever the case, more studies need to be done. While GBS and CIDP are rare, they are not rare to us.
AnonymousMarch 7, 2009 at 9:42 am
This is a very good topic. I’ve always hated the fact that most of us were told “You have GBS, the good news is that you recover completely.” Define ‘recover’!
Last fall I was diagnosed with Chiari, another nerve related and uncommon disease. During the battery of tests the question came up as to whether or not I had ever had GBS, or was it the early onset of Chiari.
It was determined I would need brain surgery to slow the progression of Chiari symptoms and I knew GBS would be very upset by such an invasive procedure. Luckily I had a great neurosurgeon who dug deeper into my records 4 years ago when I was diagnosed with GBS and determined that I had truly had it.
As expected, the GBS came back to visit right after the surgery. So was it residuals? My surgeon began to refer to my symptoms as a “flare”. I’ve been using that term to replace the residuals since then.
Whether it is overdoing exercises, the weather, or something else unanswered, I seem to continue to have “flares” that are both similar to GBS symptoms and Chiari.
AnonymousMarch 7, 2009 at 11:43 am
Now I am about 1 and 1/2 years out from the “great lifechanging event”. For better or worse… I was originally diagnosed with gbs, and recovered slowly over time.. I guess in that course, I had “flares” that were bad enough that I have been treated for cidp.. I’ve been left with some “residuals”, that include fatigue, weakness, and numbness.. But thankfully, I have found how to get thru those episodes… Wow, you guys have touched a good thread that really should be explored more…
One thing, it is just too bad that not enough people in the medical community understand this.. I guess maybe in time…….. I hope it ain’t hereditary……:eek:
P.S.. Boomerbabe.. I think Doctors are vague regarding recovery, and residuals.. They don’t even understand the cause, let alone the effect…. But, I give em credit for trying……Deano
AnonymousMarch 8, 2009 at 12:37 am
Wow, Chiari and GBS. I hope you are doing better now. Yes, I believe we have flares. I can feel fine and then it is like I crash and have multiple symptoms that last for days or weeks. Usually they follow an illness or come on when I am tired or stressed.
I think about the hereditary factor too. Every time my grandchildren get a vaccination or the flu, I worry. Are they more susceptible to getting GBS?
Another good question.
AnonymousMarch 8, 2009 at 11:12 am
Boomerbabe, yep, it was a real double whammy to learn what Chiari Malformation is. But then, I had never heard of GBS until I was diagnosed.
From what I’ve read, I don’t see that GBS has genetic factors, however, I think some of us in the same family are predisposed to similar things such as autoimmune disease. Chiari research is leaning toward more genetic traits.
I know what you mean about our children and grand kids and all the issues with vaccines. Pretty scary stuff.
As for the ‘flares’, I always seem to over analyze my symptoms. Is it related to my recent surgery or GBS? I have been lucky to work with a couple of great therapists since the surgery. They had to do a bit of research to decide what they would do with me. Good thing they like a challenge.
AnonymousMarch 8, 2009 at 10:19 pm
GBS is considered an acute rather than a chronic condition like CIDP. In the acute state there is on-going demylination causing more nerve damage, but in the later stages, with all the residuals, there is no further demylination going on. That is at least the kosher answer. I recovered rapidly after the chronic phase for six months when I had the feeling I was relapsing. I went to the neurologist who told me I was not having a relapse, but since that episode I have made no progress in my healing. I don’t know what it was, but somehow my nerves went on strike after that. But most people with GBS, even when they get more residuals, don’t experience the terrible damage of an acute phase, unless they are having a relapse. No matter how bad my residuals are I know the difference between them and what I experienced for my three weeks of hell. I think most of us know the difference between the time of our acute attack and residuals, though it can get pretty scary sometimes. I think, irrationally because I can’t prove it, that the GBS is still in my body, whatever that might mean. But I am hopeful that it won’t ever be triggered again like that first time.
AnonymousMarch 9, 2009 at 7:58 pm
Jeff, you are on target. I came down with GBS 2 years ago. I still take neurontin which works well to control my pain. I think I’m doing better so I get back working out and doing the treadmill. Then bang!!! I start having intense pain in my legs and arms. I don’t have weakness with the pain therefore I know this is a neuropathic flare up. After 3 or 4 days of rest it slowly starts to go back to baseline. Anyone that has GBS residuals must learn their limits to prevent future flare ups. If only I could live by my own words.
AnonymousMarch 9, 2009 at 8:51 pm
Hi guys.. Jeff, I read your post re: residuals and then I read a little on your history.. I think we share quite a lot of similiarities.. Is it my understanding you were healthy pre gbs, and walking good etc… Sounds like you were recovering, and at about 6 months out things sort of hit a wall, and may have declined for you.. Hence, you have had residuals of pain, fatigue etc… Are you still diagnosed gbs? Maybe I will pm…
Anyway, I hope I have stayed true to residual post, and this is intriguing to me, (and hopefully) others, as I had prior symptoms similiar, but the light bulb never went on with me, or the doctors.. They were too busy treating for lymmes and other stuff..
Hope for our recoveries……. deano:)
AnonymousMarch 10, 2009 at 9:55 am
Thanks for all the replies. I was pretty good for almost 25 years after having GBS, then I crashed. My neurologist explained to me that the initial nerve damage from my acute bout with GBS, all those years ago, was starting to kick in. She explained nervation to me, which is when damaged nerves grow little nerves to try and compensate. I was very active….rode a bike, lifted weights. Unfortunately, those new little nerves are not as strong as the original ones and eventually stop working. That is when the crash comes. DO NOT PUSH yourself. Preserve your nerve function.
AnonymousMarch 10, 2009 at 3:58 pm
Thanks for all the replies. I was pretty good for almost 25 years after having GBS, then I crashed. My neurologist explained to me that the initial nerve damage from my acute bout with GBS, all those years ago, was starting to kick in. She explained nervation to me, which is when damaged nerves grow little nerves to try and compensate. I was very active….rode a bike, lifted weights. Unfortunately, those new little nerves are not as strong as the original ones and eventually stop working. That is when the crash comes. DO NOT PUSH yourself. Preserve your nerve function.[/QUOTE]
I can totally relate. As indicated in my signature line, I was diagnosed in 1991. Although I didn’t recover completely (no where near), with the exception of foot drop and balance issues, I was doing much better.
I was able to work out and had very little pain. I still had the energy issues, but I could basically recover in a day or two if I overdid things. Then a year ago the bottom dropped out. 😮
If I comprehend correctly, this is similar to what you’re currently dealing with? I try not to push myself but I work full time (and have done so since 1992) in a somewhat stressful environment. Plus, I have to try and exercise as certain issues have caused me to pick up weight.
Can someone please find a magic pill for us? :rolleyes:
Take care and be well,
AnonymousMarch 19, 2009 at 6:52 pm
I don’t know. The terms seem so semantic in their attempt to describe what seems to me to be a case by case complexity.
I guess residual is appropriate as it may also describe the film of milk left on the glass after its consumption, that a relapse might be an appropriate description of a reoccurrence of the disease symptoms, which may have a variety of etiology/causes- many differing circumstance may cause a GBS episode/syndrome, as residuals may take differing forms depending upon many individual factors.
The bottom line is that many with GBS experience ongoing issues caused by damage, including effects exacerbated by other medical conditions or life situations such as distress. Our bodies are so complex it is hard to describe them with such umbrella terms, for my residuals may or may not be a shared experience by others afflicted. Additionally, as we age certain natural lack of physiological function may highlight the damage caused by GBS, hence, one might incorrectly conclude that old age is a residual of GBS- comparable to the notion that the fat in milk leads to obesity
AnonymousApril 8, 2009 at 3:27 pm
I think this is such an important topic and this week as I was listening to the lecture given on neuropathies and the difference between GBS and CIDP at our local teaching hospital, I was thinking about all that has been reported by those of you who live with the after effects of GBS and how similar it is to the chronisity of CIDP. I think Jeff and Dean have correctly defined the term residual and why GBS differs in this way, but I think you guys are also on to something that the medical community has yet to grasp. When the neurologists teaching this class were defining how one comes to the conclusion of diagnosis and then treatment, what was not discussed was time. How long it takes to get to a point of “functioning” and degree of functioning. I got the impression that as long as a diagnosis is determined and a course of treatment “works” then everything else is inconsequential. Like the fact that you can exercise at all tells the experts you are fine. You know it wasn’t until many many years after Polio was defined that course of treatment was drastically changed due to lack of knowledge that the more they pushed people to exercise their muscles, the more damage they did. It is very similar to post GBS. I guess what I am saying is those of us with these conditions are the true keys to the unanswerable questions. The understanding of this disease is very limited to mere diagnosis and initial treatment and that is all there is room for for the medical professionals. We need to just keep telling our stories and reporting our facts. Hopefully this will eventually influence the future diagnosis and treatment.
Sorry so lengthy.
AnonymousApril 9, 2009 at 10:04 am
I have had doctors say, “you should be glad you survived” or “well, at least you are able to walk.” I did not know for over 2 decades just how severe a case of GBS I had because, at the time of my initial attack, I was told that my chances were good that I would recover. I thought that meant 100% and no one said otherwise. Several years ago when I began to experience renewed symptoms, my neurologist explained that they do believe there is a post-GBS
syndrome. I also found, through a lot of investigation, that most people who had an acute attack of GBS eventually experience flares or relapses of symptoms, sometimes decades later. What does all of this mean? More studies need to be done, on those of us who had GBS years ago, to answer that question.
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