How fast did your symptoms appear?
AnonymousJuly 28, 2007 at 10:58 pm
Hi, I am Mrs. Matfam and I am wondering how fast all of the symptoms came about? Right now I have numbness from my tailbone to my feet. I am having a hard time feeling the urge to use the restroom and then when I do, I have to really make myself go. Sorry if that’s TMI. Anyway, I get exhausted easy, but yet, I can lie down for 1/2 hour and then I can go again. I am still doing everything I have always done, mostly because I have 2 little girls that need me to keep going. I don’t have any pain in my legs, as in a pinched nerve. I have been this way for the last 5 days. The numbness in my feet have been there for 10 days. Not sure if it will go up to my arms or not? Does it always? Anyway, as you can tell my hubby is very concerned about me and I guess I just want an answer. We did the MRI today and will know results on Monday. I am frustrated and depressed! Thanks for all of your encouragement.
AnonymousJuly 28, 2007 at 11:28 pm
Mrs. Matfam, I also am a mother of 2 small children and I really understand your anxiety. Did they give you a Diagnosis of GBS? If so why are you not in the hospital recieving treatment. GBS is a medical emergency and (not to scare you but hopefully to inform you) but can worsen rapidly leading to respiratory arrest. The sooner treatment is recieved the less nerve injury occurs. If the numbness is up to your waist and you have urinary hesitancy this is fairly well advanced. Demand hospitalization and treatment. The treatment is either IVIG( a pool of multiple donor’s antibodies)that you recieve in an IV or plasmaphoresis(a blood filtering of your abnormal antibodies). Please let us know what happens. I have found that this forum is so supportive and you are not alone. Dr. Shawn Oh by the way, I went from normal to near total paralysis in 5 days. But this greatly varies. I’m sure you will hear from others but I couldn’t go to bed without writing you.
AnonymousJuly 28, 2007 at 11:29 pm
Hi Mrs M., Go To The ER!!!! OHH by the way, Welcome to The Family! As I wrote in Kevins’ post, My first paralysis event came on in 2 hours, just after I went to bed. Please go get checked out, you are progressing pretty fast and should be checked and given a spinal tap, ncv/emg test. Don’t forget to write All your symptoms down and give the drs the list-that way they can’t get the info mixed up. If you had a pinched nerve, you would be in pain, and since you have stated you are numb and have no pain, I doubt its just a pinched nerve. Many gbs/cidp people, including myself, have back problems, and let me tell you, you have pain with a pinched nerve. You might not have pain with gbs, I didn’t until just before my 1st relapse, the original paralsis event was painfree for me, except a headache. Let us know what the ER says. Take Care.
p.s. I have 2 kids also, I was taken to the hospital at 1a.m. by Life squad, while my kids slept, my husband had to wake them up and take them to my parents house for babysitting.
AnonymousJuly 28, 2007 at 11:36 pm
Hi and Welcome!
Unfortunately each person is so different when it comes to timeline. Some just take hours to get to their worst point, in my case it was probably over a period of about two weeks, and then I was put on a respirator etc. I do remember having to go to the bathroom (near that two week period) but being unable to empty my bladder, eventually I had a catheter inserted.
The numb feeling may very well stop where it is – and many GBS’ers only get to that point, but it could possibly also move up slowly (if this is GBS or SIDP). Obviously if at any time you find it difficult to breath, you need to get the the ER immediately.
Have you had any tingling of funny feelings in your hands, fingers or face?
AnonymousJuly 28, 2007 at 11:42 pm
Just wanted to mention that Dr. Shawn is a family doctor, and when she ‘got’ GBS, she told her doc or neuro that she believed it was GBS, and they told her that they really didnt believe it was. Did I get that right Shawn? I havent gone back to check the forum, but I do remember the story quite clearly.
AnonymousJuly 29, 2007 at 12:15 am
First off, thanks for your replys. Kevin and I are having a hard time figuring out what to do simply because we don’t want to go in and then find out that it was just a pinched nerve. I do have a ? for Dr. Shawn, have you ever heard of a pinched nerve making it hard to feel the need to use the restroom or makes it numb in the bum area? I go back and forth because I don’t have 100% classic symptoms of GBS. UGH! I feel so runned down at times and I know that it could be because I am depressed, but I just have this run down feeling. TMI but I also have my period right now and the silly thing is, I couldn’t feel when I had started but I can feel the cramps in the front. And I have some back pain from my period and I can feel that. Wierd huh?
July 29, 2007 at 2:58 am
I also posted in your hubbys original post. I started out exactly like you…and also thought it was a pinched nerve. BUT had no pain which is associated with that. My symptoms were rather slow, over days not hours. I didnt get to the point where I had to be on a vent although my numbness and tingling spread all the way up my body. None of us want to scare you because this is all scary enough. But there is a chance it could get much much worse, or you could be “lucky” and not be paralyzed or need to be on a vent. And it can move fast. In my case, my hands and arms didnt start getting tingling and mumb until after my symptoms were up to my thighs and that was after 10 days from the first time I noticed it in my feet.
The classic symptoms are just a list of things people can experience. They are not a check list that definitely diagnoses GBS. Which is why a lot of doctors will blow you off, they see it as a check list and if you dont have all of hte symptoms, you dont have gbs according to them. Dont feel silly about going to the ER and standing up for yourself and taking control of your own health and well being. You have to do this because many of us here were sent home because it was “all in our heads” and we didnt present with the classic symptoms. And a lot of us ended up very bad off before anyone would listen to us. It is best to be demanding than to suffer in silence and be very afraid in the process.
The spinal is uncomfortable…I am a big sissy when it comes to needles and my back so I had a little morphine to chill me out…and it is similar to an epidural (which also freaked me out. I just dont like someone behind me with a needle that will be poking me in the back). Other people handle a spinal tap with no problem. If you were okay with an epidural then you will be okay with a spinal tap. It can result in a false negative so also insist on a nerve conduction test. INSIST! Dont let the doctors bully you around, your health is important and YOU are important.
Please keep us informed. and our prayers are with you and your family. Where are you located?
July 29, 2007 at 3:10 am
[QUOTE=matfam]First off, thanks for your replys. Kevin and I are having a hard time figuring out what to do simply because we don’t want to go in and then find out that it was just a pinched nerve. I do have a ? for Dr. Shawn, have you ever heard of a pinched nerve making it hard to feel the need to use the restroom or makes it numb in the bum area? I go back and forth because I don’t have 100% classic symptoms of GBS. UGH! I feel so runned down at times and I know that it could be because I am depressed, but I just have this run down feeling. TMI but I also have my period right now and the silly thing is, I couldn’t feel when I had started but I can feel the cramps in the front. And I have some back pain from my period and I can feel that. Wierd huh?[/QUOTE]
Not wierd at all, in fact, PMS makes my residuals act up. Just to let ya know, I couldnt go to the bathroom either. I had to sit and wait for it to do something because I couldnt “just go”. It can effect BMs as well. My whole digestive system felt numb when I was sick. I couldnt eat and when I tried, it felt as if I wasnt digesting properly. It was actually quite painful and much easier NOT to eat (which I dont recommend). Soup became my best friend.
I have tried finding info about a pinched nerve causing problems with going to the bathroom but have found nothing. I really really hope that it turns out to be that, but to be safe please please get checked and get treatment…IVig and/or plasmapheresis. That stops the progression of GBS and you can start recovering.
The peak of GBS is reached about 3-4 weeks from the onset of symptoms. That is when you will stop getting worse. You will reach a plateau and could stay on taht plateau for a while and then start getting better. You will start getting better sooner with treatment. and the damage will be less.
AnonymousJuly 29, 2007 at 8:35 am
Hi, there! I’m sorry you’re going through such a scary and frustrating experience trying to find out what’s wrong. As others here have said, most of us walked a winding path to a GBS dx. I had ascending tingling and paralysis that started in my feet and progressed up my body over days, not hours. Some people go from normal to fully paralyzed in a matter of just a few hours! But for others, it can take up to 4 weeks to reach the worst point of the disease. My neuro said that especially with those who experience a slower GBS progression, it can take up to 3-4 weeks for the tests (spinal tap, nerve conduction tests) to turn up positive. I reached my lowest point about two and a half weeks from symptom onset.
I underwent all my tests less than a week from the first tingling in my toes, and the spinal tap and EMG came back normal. There was some concern about MS because of some abnormalities on my MRI, but MS doesn’t present as ascending paralysis the way I was experiencing it, and the spinal tap didn’t show classic MS markers either. Eventually I was sent home from the hospital being told it was all in my head and to come back for a follow-up in 4-6 weeks.
I refused to accept that answer, especially since my paralysis continued to worsen and I started to have trouble breathing when I got home. I sought a second opinion from another neuro (had my PCP call in the appointment so that I could get in to see the new doc ASAP), and that neurologist had enough experience with GBS to recognize the signs and to know about the delay in tests turning up positive, thankfully. I honestly didn’t know what was wrong with me and thought I was going to die. It was a relief to finally have a name to attach to what I was experiencing. I was immediately hospitalized and started on IVIg, and I stabilized. Never needed a vent, never reached full paralysis. I was only in the hospital for less than a month. So many doctors don’t have any experience with GBS and don’t understand how to recognize or dx it. If you aren’t satisfied with your experience thus far, find another doc.
All that is just to say that GBS is not a straightforward thing to dx a lot of the time. You have to be persistent and stand up for yourself when you’re not getting the answers you need. What you have could be GBS, or it could be something else, of course. I assume that they are looking for signs of something like MS in your MRI (as they did for me), and I understand that it takes time for a radiologist to read an MRI and give a report. However, tests like a spinal tap and an EMG/NCV can be done right away. You can ask your doctor to have you directly admitted to the hospital for testing and bypass the ER mess if you’d rather, which is what I did. You get results very quickly that way. Since you’ve already had the MRI, they can probably call up the report there in the hospital and give you a reading now. If there’s a chance it could be GBS, it’s best not to wait if at all possible.
You also asked about whether a spinal tap is painful. I personally experienced no pain during the procedure, as I had it done using an X-ray so that the doctor could be very precise with the needle. I’d recommend that to anyone having one done, and if I ever have to have another one, I will request that it be done with X-ray again. Though the actual LP was fine, though, I had a horrible headache for four days afterward, even though I tried very hard to stay hydrated. I’m sure the GBS complicated things because I was unable to eat while the GBS was progressing. I’ve heard that drinking a lot of caffeinated beverages helps alleviate the spinal headache for some reason. I didn’t try it; I was too ill to think straight at the time.
Do you have any other symptoms besides the numbness? Or is that all? Can you move your legs normally? What about your coordination? How is your appetite? Any strange sensations? Metallic taste in your mouth? Are you breathing all right? Just curious what else is going on besides the numbness. There are many possible symptoms of GBS.
I have two young children as well, so I understand what you mean when you say you have to keep going for them no matter how bad you feel. Good luck! Please keep us posted on your progress.
AnonymousJuly 29, 2007 at 10:30 am
We live in Oregon and in Portland we have a hospital called OHSU and it has a special unit just for GBS. My Neuro said that if the MRI came back fine then he was going to do a nerve test. What are they looking for? You guys have all been great and we really appreciate all of the replies. I know this is going to sound wierd, but tomorrow is my appt with the Neuro and so I guess we are waiting alittle while longer. Maybe we shouldn’t, but that is where we are at. Depending on what we hear tomorrow, Kevin and I are going to demand that I get further testing. By the way, thought this was kind of sad that the Neuro doesn’t know what he is talking about, he said that older people are the only ones to get GBS. WHAT??????? He needs to do some more research. Ha!
AnonymousJuly 29, 2007 at 12:17 pm
Matfam GBS could happen to anybody. Did you get sick recently that would trigger the GBS? Also remember anytime your symptoms change even slightly go to the emergency room right away even if it is before your appointment tomorrow. You don’t want to mess around with GBS.
I got the flu shot that triggered my CIDP. So now I can’t get vaccination for anything in case it will make my CIDP worse.
Also print stuff from this website [url]http://www.gbs-cidp.org/[/url] for information to give to your DR tomorrow or any DR you see about this. Kids get it also anybody any age can get it.
The sooner you get treated the better chance you have of making a better recovery. So tomorrow if he says your result was fine then demand all the test like spinal tap and emg/ncv test. It is your body and your life they are playing around with you don’t want them to mess with that.
I have CIDP a mild case where I have symptoms that progress beyond 8 weeks.
July 29, 2007 at 12:33 pm
Dear Mrs. M,
I responded in your husbands post. Anyway, I don’t think you should wait!!!!
my son presented much like you. as I mentioned before, the bladder and bm issue were SOOOOOON followed by the breathing issue. I wonder if waiting much longer would have rendered us a hook up with a ventilator! THE LONGER YOU WAIT< THE MORE DAMAGE!!!!!! If you are worried about feeling silly if it is a pinched nerve and not gbs, you might feel worse if you wait and it IS gbs. GO TO THE ER, demand an er doctor order a spinal, if the spinal should come up neg, demand a ncv/emg. Regarding your question about the pain associated with a spinal, my ten year old son had two. The first time in the er, he was given a patch for numbing the area that the lidocaine would be put into (this is the main numbing medicine for when they insert the spinal needle) I also insisted on valium to help difuse the situation. If you are feeling really bold, ask for a anesthesiologist to do the procedure (they always do epidurals, and yes, I wouild compare it to your epidural you recieved at delivery) My son Kevin had two attempts the second one was completed and rendered an elevation of protein. As I mentioned, you may not have an elevation, if not DEMAND ncv/emg. YOur comment regarding your physician stating that gbs is an old persons disease should be the BIGGEST RED FLAG FOR YOU TO DUMP HIM! My son was 9 when he got it, there are younger. As I mentioned in your husbands post, have you had any recent gastrointestinal ailments, respiratory, surgeries, innoculations, sinus infections or in my sons case three bee stings? If so, mention this to the er doc as a possible trigger. These types of triggers do not always happen, but sometimes they do. Print out factual info from this site or ninds, highlight your symptoms, show the doctor DEMAND! INSIST! You have two small children to take care of, if it is gbs or cidp, the longer you wait to get ivig or pp or what ever course of treatment, the more damage, the longer it will take to recover. I hope I have not been to forward, but if I had waited and listened to the first two doctors or so they call themselves, I wonder where we would be today. WHATEVER you do, do not let them label you with the proverbial psych dx of conversion disorder (this was our first dx) I know that tommorrow does not seem that far away, but I tell you the truth, it was a matter of hours between the difficulty urinating and the breathing issue. Good luck, we will pray for you in Church today. Dawn Kevies mom 😮
AnonymousJuly 29, 2007 at 1:41 pm
Someone asked if I had been sick and really the only thing I can remember was I had some drainage and kind of a sore throat right before this happened. Nothing serious though. And this is kind of funny, but I had a Pedicure 2 days before my feet became numb and I thought for sure that she had poisoned me. Ha! Anyway, thanks again for your thoughts and prayers! We really appreciate it and will keep you posted.
July 29, 2007 at 1:46 pm
We live in Idaho now, and when I got sick we lived in san diego. You are very lucky to have a hospital with dedicated unit. Very lucky! Please take all of the advice here and take charge of YOU. We arent here because we dont know anything. Sheesh we could teach doctors a whole lot about GBS! When I first came here looking for info, I hadnt been to a doctor either. When I aksed questions about the possibility of it being GBS, the answer was “The fact that you are here says something”. Your inner self KNOWS. Trust it.
this is my first post…it wasnt 2 weeks, it was only 10 days. Does it sound familiar?
A little over two weeks ago I noticed my toes kept “falling asleep”. It was more annyoing than anything. It then involved my feet. Now below my knees feel funky…heavy, tingly, feels like muscle cramps in my soles and ankles and a detached feeling too. My hands are very mildly tingling and a tiny bit tired.
I did some research…thinking this whole time I had a pinched nerve from all those years of bad posture and whatever….and it has all led me to think of GBS. It hasnt progressed past my knees so I am not too freaked out, but after reading about GBS I have to admit I am a bit scared. Should I be more concerned than I am? Should I not even be thinking GBS? any and all feedback is gretly appreciated.
AnonymousJuly 29, 2007 at 3:51 pm
Ali, you remenber correctly. They(neurologist) told me it wasn’t GBS because my spinal was initially normal and my NCV was only slightly abnormal. These where both done within 8 hours of 1st symptom. I presented early with only hand feet tingling because I thought I had GBS. In my research I have found it take 1 – 2 weeks sometimes for the protein to elevate in the spinal fluid. So neg test does NOT rule out GBS.
The spinal tap is just like an epidural as far as discomfort. I have had 2 epidurals and didn’t really notice the pain much because I was in hard painful labor. The 2 taps I have had hurt a little but only for a minute. The worse part was the spinal Headache I had with my 1st tap. I then had to have a blood patch(another spinal tap) and this was much more painful but worth it to fix the headache. To lesson the chance to get HA don’t get up for 12 hours. Lay flat!
You can get sacral numbness(bottom area) and urinary retention with a ruptured disc and this is also a med emergency and itself another reason to go to ER. They can do a CT or MRI stat to diagnose and surgery immediately is usually needed to relieve the pressure of the cord and nerves. But I don’t think this is your problem from the limited info you have given it is supicious for GBS. Dr. Shawn
AnonymousJuly 30, 2007 at 2:41 am
my onset was very quick – woke with pins and needles in my hands and within a couple of hours had numbness up to elbows, slurred speech and double vision. Within 24 hours I was having trouble walking (and i do remember having trouble going to the toilet – like i felt i needed to go but the musclkes weren’t working, although at that time i didnt know it was GBS) In a way i was lucky that i went downhill quickly as it made it more obvious that it was GBS (like most people when i went to the ER the docs dismissed my symtoms but luckily agreed to keep me in overnight) Not everyone progresses so quickly, like others have said onset can take weeks.
I hope you get a diagnosis one way or the other quickly!
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