Atypical Presentation of GBS
May 7, 2007 at 5:39 pm
What are your “atypical” symptoms, what varient do you have? Dawn Kevies mom 😮
AnonymousMay 7, 2007 at 6:06 pm
Hi Kelly: My GBS presented itself in a very atypical way. I had pain in my legs for a month before onset, but no tingling or numbness at all. One moment I could walk and the next it was like someone had tied 50 pounds weights on my thighs. I never had tingling or numbness until paralysis set in. The doctors orginally argued over whether it was GBS because of the onset-some thought MS and others CIDP. Turned out it was GBS. The argument over the diagnosis prevented any treatment for 5 days and then I was told the IVIG didn’t work either. My recovery has not been great, though I can walk for a short time-fatigue and pain remain severe and my legs get tired very quickly. I would also like to know how your presentation was atypical. Jeff
AnonymousMay 7, 2007 at 7:32 pm
I wonder if there is actually such a thing as a “typical” presentation. I think the “typical” symptoms are intended to be used as a general guideline for medical personell, although I’m not sure that they are actually used this way.
My own case was atypical. My first symptom was severe, debilitating pain- the worst of it lasted nearly a month, and required narcotics to control, although the medical literature says that narcotics are not effective for this type of pain. I eventually had paralalysis of only one vocal chord and my upper arms. I also developed a limp which lasted for approx. 2 mos. I retained my reflexes, although I had crossed aductors (hitting one knee or elbow resulted in movement in the opposite knee or elbow). My spinal tap was negative. My first EMG test was “normal”. I had profound weakness in both legs, although I could still walk (barely). I had random patchy areas on my skin with no feeling at all. My upper right side was weaker than my lower left side. I had no sense of where my body parts were, without looking. My blood pressure fluxuated randomly.
My neurologists were confused because I was not the “typical” textbok case.
Since I have “recovered” (I agree with others that this is a very relative term), I have heard of many, many others who had very different symptoms than the textbook model.
Most doctors have never seen a case of GBS, and rely only on the symptoms shown in medical texts, most of which are outdated.
AnonymousMay 7, 2007 at 9:03 pm
In Feb 2006 had change in vision (spots and flashes) and tingling in tailbone. In April 2006 suddenly experienced tingling in feet and hands, eventually face and experienced paralysis in face (left and then right sides). Had tightening of larynx which changed timbre of voice.
Diagnosed w/Mono near end of April (my neuro figures this might be my exposure to whatever began GBS). By the time I was diagnosed w/this “atypical” presentation GBS, neuro said it was too late for IVIG.
All symptoms subsided (except residual vision changes–continuing spots and flashes) in late May 2006.
In Dec. 2006 caught cold and haven’t been the same since. Now symptoms are tingling, numbness, burning, sharp pain in places I don’t recall having been effected last April except perhaps tailbone, legs and arms and face. Each day it seems as if a new area is affected; sometimes the pain is so severe I find it difficult to move.
I’ve been treating topical “hot spot” points w/Lidocaine but with very little impact (except for the first day using them).
AnonymousMay 8, 2007 at 5:15 am
I agree that everyone’s experience of GBS seems to be different, very few people have the exact same combination of symptoms. Mine was “atypical” in that it started in my hands and descended rather than the classic ascending paralysis. I had no pain at all whereas many people here have spoken pain like i could never even imagine.
Like you i also experienced changes to my voice (which probably alarmed me more than anything and was what eventually got the doctors in the ER to take me seriously) The speech pathologist said it was because my palate wasnt moving. i also had paralysis in the face, at one stage was unable to open my eyes and also experienced double vision.
When you read other people’s accounts there will be moments when you think “yes that is what i had” but no ones story is exactly the same. By the way, i had Miller Fisher variant.
May 8, 2007 at 10:13 am
Does anyone get new added symptoms? Kevin has had burning in his feet for the last two days. They actually are warm, we rest his feet on top of ice packs, it seems to help. I gave him tylenol for the pain and aleve for the burning since I assume the burning is inflamation. Does anyone have any other advice? Dawn Kevies mom
AnonymousMay 8, 2007 at 8:48 pm
If I had accepted that diagnosis from my first and now former neurologist…I would probably not be here. I went and got two other ‘second opinions’ and actually received the tests and treatments of and for CIDP. If you have decent insurance, it certainly can’t hurt to get another view on what is happening to you. If your current doctor is correct at least you have some confirmation of that assessment.
Most non-HMO plans allow for getting second opinions. Just be sure to obtain all prior records leading to that one doctor’s diagnosis [x-rays, MRI’s CatScans, blood tests, nerve conduction reports] Your current doctor may charge you to get copies of his reports, but in the end it could be well spent money. Finding the ’cause’ of the problem isn’t always what’s needed. Finding the doctor who will treat you properly and best for your problems is what is needed.
My first ‘second opinon’ neurologist is now my primary neurologist. My second-second opinion neurologist is the head of an area research hospital and was the one who ordered additional tests that my current neuro was cautious about doing right off. Were it not for all that testing and seeking help, it probably would not be a good outcome.
It is always worth the time to try it and see.
AnonymousMay 8, 2007 at 10:27 pm
> Kevin has had burning in his feet for the last two days.
> They actually are warm, we rest his feet on top of ice packs,
> it seems to help.
I can honestly say I was 100% opposite than this.
To me it was exactly the other way around!
My feet were completely *frozen*.
I would wrap layer after layer of things around both my feet and hands.
(Socks, then a towel, then 2 Blankets over that.)
Same thing with my hands, I would wear gloves all day cuz they were so cold.
Now, after IVIG, when the feeling started coming back, I felt a “burning” sensation in them, but they were never hot to the touch.
AnonymousMay 8, 2007 at 10:56 pm
I had hemoraging inside the eye so my vision changed several times in an hour. Plus the eyes were not tracking together and were wide open and swelled and hurt to the touch. This sure was a challenge to have and try to learn to stand, walk and do steps. I had pretty much followed the ones on the message boards. I was not on any meds for pain except for the injury to my shoulder from two falls. I don’t know if I learned to not fall or learned to walk better! But I am doing ok now after 18 months as of May 6, 2007. I did have the burning hot which turned out to be itchy and Noxema did help with that. Still happens but not for long periods of time, but while it is happening you want to pull your skin off. The cold feet was not the case at first but now that has changed. I keep them covered when not in use. I also tried the Vicks Vapo Rub and it did not help my feet like it did others but my sinus are clear and the cat will not lay on the bed anymore! I also got the carpel tunnel symptoms but they went away after a few months. Now my eyes are very clear except for a small amount of pheriphal problems but ok for the most part. It has been very interesting to watch how everyone is so different, but also so very similar in the symptoms. I just felt as long as I was seeing any changes that was a possitive sign my body was trying to still heal!
AnonymousMay 9, 2007 at 1:25 pm
“I had hemoraging inside the eye so my vision changed several times in an hour. Plus the eyes were not tracking together and were wide open and swelled and hurt to the touch. This sure was a challenge to have and try to learn to stand, walk and do steps.”
Wow. That sounds rough!
My spots and flashes don’t impede my functioning – they just surprise me. I went to a neuro-ophthalmologist who figured that there was inflammation inside the eye that resulting in flaking (the spots)–a condition referred to as uveitis–but that the inflammation was near the center of the eye, rather than the periphery (which is more common for uveitis), and thus, the flashes of color. This condition is most likely the result of the same infection that allowed me to contract GBS. For a while the docs thought I had MS and also Acute Idiopathic Blind Spot Enlargement Syndrome (AIBSES).
MS, AIBSES, GBS, CIDP…I guess it can’t be good for you if they have to abbreviate it.
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