New to GBS and Need Info/Help
AnonymousAugust 18, 2008 at 11:31 pm
Hi there everyone. I found this in a thread on the Lighter Side and thought it belonged here so am reposting for Cheryl and have let her know it is here. SOunds like she needs a bit of help and info from those of you who have GBS/CIDP.
HI MY NAME IS CHERYL, THIS IS THE FIRST TIME I’VE BEEN TO THIS WEB SITE , WHAT BROUGHT ME TO THIS IS A LONG STORY IN FEB 08, I RECEIVED A TB SHOT AND A FLU VACCINE IN DEC 07, IN FEB 08, I STARTED WITH NUMBNESS ON MY BACKSIDE, THEN IT WENT DOWN MY LEFT LEG AND THE BOTTOM OF MY FOOT, MY DR THOUGHT THAT I HAD A RUPTURED (sp) DISK, SENT ME FOR AN MRI AND IT WAS NEGATIVE, THEN THE PAIN INCREASED AND THE NUMBNESS WENT DOWN MY RIGHT LEG AND INTO THE BOTTOM OF MY RIGHT FOOT, I’M WALKING WITH FORE ARM CRUTCHES, I WAS TOLD BY MY A NEUROLOGIST THAT IT WAS DEPRESSION AND I WAS PUT ON MEDICATION, I WAS IN SUCH PAIN THAT I NOW TAKE VICODAN AND I AM ON A PAIN PATCH AS WELL, I HAD AN EMG IN MAY AND WAS TOLD THAT IT MIGHT BE GBS BUT IT WAS NEVER CONFIRMED I HAD ANOTHER EMG LAST WEEK AND WAS TOLD THAT I NEEDED A SPINAL TAP, THAT IT WASN’T DEPRESSION ( I COULD OF TOLD THE DR THAT). THE NEW DR TOLD ME THAT IS THEIR WAS PROTEIN IN MY SPINAL FLUID THAT IT IS GBS AND IF NOT THAT I WAS SOMETHING ELSE THAT HE WOULD TALK TO ME ABOUT LATER, BUT LETS GET THE SPINAL TAP DONE FIRST, I GOT FOR THAT TOMORROW, I AM VERY SCARED, I JUST HIT MY 5 YEAR BATTLE WITH BREAST CANCER AND MY HUSBAND HAS A FORM OF ALS. DOES THIS SOUND LIKE GBS TO ANYONE OR CIPD, I HAVE DONE SO MUCH RESEARCH THAT MY HEAD IS SPINNING AND I’M DRIVING MYSELF CRAZY, I’M NOT EVEN SURE IF I’M ON THE RIGHT PAGE TO WRITE THIS EMAIL. IF SOMEONE WASNT TO ANSWER ME THAT WOULD BE GREAT, AND IF THIS IS THE WRONG PLACE TO WRITE THIS EMAIL COULD YOU LET ME KNOW THAT ALSO. THANKS FOR READING MY CONFUSING EMAIL,
THANK YOU IN ADVANCE, CHERYL
AnonymousAugust 18, 2008 at 11:39 pm
Hi Cheryl, Me again:D Just wanted to wish you good luck with the spinal tap tomorrow. I am sure the docs will get to the bottom of this. You have a full plate right now and I know this is the last thing you want to happen. Please keep us posted and let us know how tomorrow goes.
I had GBS 25 years ago and was told I was depressed and not dealing with things at home when I first began exhibiting symptoms so I am not surprised that you have been told this. GBS has many symptoms which are similar or can be found in other disorders so often we are given incorrect info in the beginning. The spinal tap is one of the ways they can conclusively diagnose GBS. They will look for elevated protein and this gives them an indication of what is going on.
Whatever we can do to support and help you through, please do not hesitate to ask.
AnonymousAugust 18, 2008 at 11:44 pm
Thanks For Helping Me, I’m Very Confused On How To Work This Web Sit, I’m Sure I Will Get Use To It, I Am So Happy That I Found ThisWEb Site, I Have Been Going Crazy And Driving My Husband Crazy With What Is Going On, I Pray Every Night That I Will Wake Up And This Will Be All Over. Once Again Thank You For Answering My Email And Posting It In The Right Place. I Hope That I Will Talk To You Soon, If I Can Figure Out How To Work This.
AnonymousAugust 18, 2008 at 11:50 pm
Cheryl, I’m not that great either but I am learning. If you have some questions about how the forum works, ask away and I will try to help or there will be someone here who can. If you click on my name “jan83” or anyone elses you can send a private message to that person if you have something you want to say but don’t want everyone to see it. At the top right hand corner you will see a small bos that welcomes you and a private messages line. It tells you if you have any private messages. You can click on the words private message and it will take you to where you collect it. I will send you one now so you can try it!
AnonymousAugust 19, 2008 at 12:04 am
Hi Cheryl! I’m a little new to this GBS/CIDP myself and am trying to get a diagnoses for what is causing my CIDP. Kind of strange the symptoms. Many years back with Lupus and really before then, I started out in my left leg getting numb and tingly that went to the right leg.They did EMG and only found sensory neuropathy. Now I have CIDP of unknown etology. Was tested for everything. They finally diagnosed me with Lupus and then years later the neuropathy went into CIDP. Chronic Inflammatory Motor/Sensory Demylenating Neuropathy. Still waiting to hear from Duke. All these years though, they never did a spinal on me. That is what has me baffled. But I think they will at Duke. I hope!
You are in the right place here and I wish very good luck tomorrow and hope that you get the proper diagnoses and start the road to recovery. Sounds like you have had a really bad time these past 5 years and I pray that you start getting good luck here and get well soon.
Not fun being sick and the unknown is very scary! I wish you my best! Good luck tomorrow!
AnonymousAugust 19, 2008 at 12:11 am
I want to thank you for taking the time to read my story, I hope that they do find out what is wrong or what is causing all this strange stuff going on in my body, I really thought that after living with stage 3c breast cancer that would be enough, but i guess not, I’m not sure if it is GBS or CIPD, my sounds more like CIPD ( I think) because of my symptom, this has been going on for 5 months and i think that if it was GBS a lot of the symptom happen within weeks not months, but i could be wrong. I will keep everyone posted. Once again thank you for helping .
AnonymousAugust 19, 2008 at 12:11 am
Hi Cheryl. Welcome. I’m glad you found us.
I hope that Jan has helped you figure out this site. It can be confusing in the beginning but, I promise, once you get it figured out it’s not that complicated.
The research in the beginning can be overwhelming. Been there – done that. I SO know what that feels like. Just take it 1 page at a time. It helps to take a few days away from researching too…just to clear your head from all of the medical lingo.
I think the main difference in diagnosing CIDP & GBS is that with CIDP you will progress over a longer period of time. Usually GBS gets to a point quickly & stops – then your body starts to heal slowly.
So, my first question to you would be, have you progressively gotten worse since February?
If you keep getting worse then I would lean more towards CIDP. But keep in mind that’s just my best guess. Most CIDP’ers end up getting diagnosed with GBS anyways, then once they have a relapse it gets changed over to CIDP.
I know you are worried about the spinal tap. But honestly, it isn’t THAT bad. It’s not comfortable & it can be scary but you’ll be fine. My daughter was diagnosed with CIDP when she was 4 years old. She’s had 3 spinal taps. The last one she was WIDE awake for – she was 5 then. If she can do it (she’s the QUEEN on drama) then I know you can do it too. 🙂
Most people with GBS or CIDP end up having elevated protein levels in their spinal fluid. However, there are a few that don’t. So don’t get discouraged by those results. They aren’t the end all be all of GBS/CIDP diagnosis. OK?
When you had the MRI what area of your body did they do? Most people who are suspected with GBS or CIDP get MRI’s of their brain & spine.
Good luck tomorrow. Remember to take deep breaths & you’ll be ok. Let us know how it went when you can.
PS, I want to add that I really admire you for getting through breast cancer. I recently had a cancer scare & that was hard. I cannot imagine what you’ve gone through. You have my upmost respect.
AnonymousAugust 19, 2008 at 12:22 am
I am happy to hear that your daughter has been in remission for 18 months that is so wonderful, I guess if your daughter can go through a spinal tap at her age I can to,( and I won’t complain), They did 2 MRI’s and said that my spine was clear, showed no disc problems and no cancer, I had a CT of my brain in December 07, because of a head ache problem and it was clear, no tumors and no lesions, my weakness is about the same, I am in PT 2x’s a week and also I do pt at home twice a day, my feet are numb, and the back of my legs are numb also , and my left arm ( bottom) from my wrist to my elbow and on my right arm from my elbow up to my shoulder, it is really weird, I have never been through anything so crazy, at least when I was dx with breast cancer their weren’t any question about it it was positive and i took care of it but this is a different beast . Good luck to you and your family and thank you for helping me, I will keep you posted. Have a great night.
AnonymousAugust 19, 2008 at 12:36 am
Cheryl – You can still complain about the spinal tap. I would! And believe me, so did Emily, LOL.
The good thing about you already having MRI’s done on your spine & brain is that if your dr wants to do them again (which he/she should) they will have the old ones to compare them to.
Emily was the hardest case of CIDP to treat. She would relapse if she went 2-3 days without treatment. The dr’s had never seen anything like it. Luckily, we got it under control & she’s come a long way. So remember, if you do end up with GBS or CIDP, that you can get better!
AnonymousAugust 19, 2008 at 12:38 am
Have a good night too Cheryl! Sweet dreams tonight and I hope you are able to sleep okay not being nervous. Me! I’m a big chicken when it comes to needles. Hated them as a child and still hate them today! I get pure panic attacks when I see that needle coming!
And the worst part was years later in life, I saw lupus with many labs. Spine injury with steroid injections and CT Mylegram. And then more labs. And to top it off, I’m now stuck having to take B-12 injections. Needles needles everywhere. Here a child sits there and can handle a Spinal and here I am in my late 40’s and still scared of the needles. I guess some can handle it while others can’t. The CT Mylegram is almost like a Spinal and I did okay I guess! Just the dreading part is what got to me. Once they started is went rather quickly. Have a good night and good luck tomorrrow.
AnonymousAugust 19, 2008 at 10:24 am
If you see this before you go for your spinal, just wanted to say good luck. It is not as bad as it sounds….I had a couple of them when I had GBS and I don’t remember it being too bad. Uncomfortable. As Stacey said, her daughter could do it…you’ll be fine!
Glad you found us and hopefully we can support your needs as you go through this challenge.
Take care and look forward to hearing the results. We’ll pray for a good outcome….
AnonymousAugust 19, 2008 at 10:57 am
Good luck today with your spinal tap. I am also new to this forum and trying to learn my way around. It does seem easier the more I’m on.
I was diag. with GBS April 2007. It started with numbness & tingling in my fingers & the inability to use my hands right. They just didn’t do what I wanted them to do. That was on a Wed. By next Wed. I could not stand alone or walk. NO balanced what so ever. Numbness & tingling from my head to my toes.
My oldest daughter is an RN as am I. By now she has me diag. with GBS, drove me 50 min. to a larger city, with better neuro’s than we have local, to the ER. I had been to my GP that day & went for a MRI of brain. Because I am also a brain anurysum survivor in 2002, so that was her first thought may be related. So anyway took MRI of brain with us to hosp. They did the lumbar puncture in the ER, MY protien was normal high. No reflexes and very emmotional about the numbness and paralysis. Felt like a vise grip around my chest area but I was able to maintain my airway.
Admitted & IVIg started that night. Next day MRI of spine & definite diag, of GBS was made. I spent 6 days on neuro unit and then straight to in-pt. rehab. I was still progressing with the disease process & so sick the first week in rehab. but was forced to do it. Spent 3 weeks in rehab. before released home & I was progressing well until Nov. when I had a major relapse.
Went for second opinion & was diag. with acute sensory neuronopathy a more rare form of GBS.
I have really rambled on I’m sorry, but it helps me to hear others stories and helps to better underestand what I’m going through.
I wish all the best in this whole process. You have been through so much already with the cancer but that just shows how tough you really are & you will be able to handle what ever they throw at you. God Bless & you are in my prayers. Keep us informed as we do all truly care.
AnonymousAugust 19, 2008 at 12:40 pm
Cheryl-welcome to this forum. I hope your spinal tap went ok. I have cidp and my protein level was normal in my spinal tap but my EMG was what corfirmed my cidp + the multitude of blood work done to rule out everything else. And you are right-the nature of this beast is so different, and it keeps changing. Let us know how everything comes out. Please make yourself at home and feel free to ask questions or vent or just say hi anytime you want. You and your husband are in my prayers. You are with friends here that understand everything you are going through. Take good care.
AnonymousAugust 19, 2008 at 9:13 pm
i would like to add my welcome to those of others as well as a hope that all went well with the testing today. I also wanted to say that not all people with GBS or CIDP have an elevated protein in the CSF fluid, but it is an important test to do, because 90% of GBSers do and because it is important to make sure that there is not evidence of MS.
I would also like to say that in you description, it sounds like your hands might not be affected??? as you said you are numb on the bottom of one arm from wrist to elbow and on the other arm from elbow to shoulder. As well only the backs of the legs are numb??? GBS/CIDP is often stocking and glove in distribution because it depends on the length of the nerves not their origin. (In other words, the whole foot is numb like wearing a numbing sock or the whole hand like numbing gloves are being worn). When there are patchy changes, this makes one think the problem might be with individual nerves–the lowest ones from the lumbar spine (L4 and L5) are associated with numbness on the top of the foot and front of the lower leg (shin) and the upper Sacral (S1 and S2) are associated with numbness to the back and bottom of the foot and the back of the calf, respectively. There are also different nerve roots of the cervical and thoracic spine that are associated with numbness of the arms with the higher ones down the front of the arm and the lower ones up the back of the arm. MMN is one of the problems that deals more with multiple individual nerve roots and so is a little different than GBS/CIDP. As many people say, there are many variations and overlaps, but if your hands are not numb or not the front of your legs, it is important to make sure that your neurologist knows this.
WithHope for a cure of these diseases.
AnonymousAugust 20, 2008 at 2:55 am
How did things go today? I hope they got a diagnoses for you and hope it can be treated. See you have not posted back and hope you are okay! A little worried about you! I’ve been somewhat in your shoes and pray that your life gets better. Not fun being sick! A big cyber hug heading your way! Hugs
AnonymousAugust 20, 2008 at 10:34 am
I’m sorry that I haven’t replied until know, but I was on bedrest until 6:00am this morning and my comp is in the family room, I haven’t heard from the Dr yet, he said that he would call me or if I haven’t heard from him I should call him at 1PM today. The Spinal Tap was easier than I excepted, It was done at the Hospital I worked for, I worked their for 13 years so everyone was trying to make it very comforting. When the Neuro Dr was done he said the fluid looked very clear, no blood. I guess that is good ( he said it was), He also talked about Chronic GBS to the nurses while he was doing the procedure, ( has anyone every heard of that) he told the nurse that my symptom are different than normal GBS, (I’m not sure how to word it). He said or I thought he said that Chronic GBS starts at the top of the leg. That is how I started. As soon as I hear anything I will let you all know. It is so nice to have you all to talk to. I will be back soon with the result.
August 20, 2008 at 11:23 am
The statement that there was no blood means that it was a clean sample. If they get blood mixed in the fluid, they have to repeat it. It is great that they told you about the bed rest. Laying flat on your back for a good 8 hours will help the area to seal up and spare you the nagging back ache that comes with it.
About the chronic gbs, he could be refering to recurring gbs, a rare condition where gbs continually recurrs, at what intervals I am not sure. It is rare. OR he could be referring to cidp, what my son has, some times called the chronic form of gbs. Chronic inflamatory demylienating polyneuropathy. Either one is dx by the amount of time the symptoms occurred, both can have an elevated spinal fluid and similar results on a ncv/emg study. Time of onset of symptoms to the plataeu of the worst symptoms is the differentiation of the two. Gbs usually peaks by 4 weeks, cidp can take months of symptoms. There is a search on the site you should do. A member named Ali posts What’s In A Name, an article that is informative. I will pm her and ask her to send it to you. Regardless of which you have, ivig would be the treatment for either and should be started IMMEDIATELEY. I suspect your doc will be aggresive, it seems he has already started on the right path by getting you in for the spinal and putting you on bedrest and reminding you to call him by 1pm if he has not contacted you. He seems very on top of the urgency of the situation. That is a wonderful sign!!!! Good luck. There is medicine, there is hope, and there are plenty here who will help.
Dawn Kevies mom
AnonymousAugust 20, 2008 at 11:24 am
I’m glad the spinal tap went well.
CIDP used to be called chronic GBS – many neuro’s still use the term though. All of Emily’s paperwork from the dr says chronic GBS on it. CIDP & GBS used to be thought of as basically the same illness but with CIDP being the chronic version.
Let us know what the dr says.
Take it easy today & it’s ok to “milk” it a little bit, LOL.
AnonymousAugust 20, 2008 at 12:02 pm
I am so glad you survived the LP. Your a brave soul;)
I went to my GP Monday & I asked her if GBS symptoms persisted for several years does that mean it would be CIDP & she told me NO, two different disease processes.
Guess I need to do more research. Because the symptoms seem so close and the same. The only difference I can see is in the beginning when GBS hits & progresses so rapidly for at least 4 weeks.
I was told mine didn’t progress to resp. failure because it was diag. so rapidly & IVIg was started immediately!!!
Well anyway this is my take on the gbs/chronic gbs thing. I really don’t have a clue. I just know the last 16 mo. have not been fun. But I just take it one day at a time as should you.
AnonymousAugust 20, 2008 at 5:54 pm
WELL, I JUST RECEIVED THE PHONE CALL FROM NEURO DOC AND HE HAS DX ME WITH CHRONIC GBS, HE SAID THAT THE PROTIEN (SP) IN MY SPINAL FLUID WAS 200 AND IT SHOULD OF BEEN MY AGE (43) AND HE FOUND WHITE BLOOD CELLS ALSO (60) OF THEM, HE IS WAITING FOR A CULTURE TO COME BACK AND HE IS GOING TO START ME ON PREDNISONE 60MG ON FRIDAY, AND ALSO SAID THAT IT SHOULD TAKE 5-8 WEEKS TO REVERSE BUT WE WOULD TALK MORE ON FRIDAY WHEN I SEE HIM, DOES THIS SOUND LIKE ANYONE ELSE, ANY INFORMATION ABOUT TAKING PREDNISONE (sp) I WOULD LOVE TO HEAR, HE TOLD ME THAT I WOULD GAIN WEIGHT , THAT I WOULD REALLY HAVE TO WATCH WHAT I EAT, BUT THINGS WILL GET BETTER. HE SAID HE IS GOING TO TALK TO MY PHYSICAL THERAPIST. I HAVE TO SEE ONE OTHER DR HE IS A UROLOGIST, ONCE AGAIN I AM RAMBLING ON. I HOPE THAT EVERYONE IS HAVING A GREAT DAY, I LIVE IN MASSACHUSETTS AND THE WEATHER WAS WONDERFUL TODAY. HOPE ALL IS WELL TALK TO EVERYONE SOON, I HAVE TO SIT AND PROCESS ALL THIS.
TALK TO EVERYONE LATER
AnonymousAugust 20, 2008 at 6:44 pm
Cheryl, as much as I want to say I am so sorry you had to hear this news, the upside is you have a diagnosis. Now treatment can begin for you. You will need to get your dr. to define chronic for you as he may mean CIDP. The treatment for GBS and CIDP are different as there is long term planning and treatment for CIDP. There are folks on here who are quite well versed in that area and I am sure they will jump in here to give you recommendations for what you need to ask and request as a treatment plan.
Take a couple days to process, think of questions you need answered, write it all down so that you can remember them when you get to the dr. Also ask those same questions here so you will know what a lot of the people on the forums are getting. They may even have suggestions for you as to what questions you should ask.
Here is a huge cyber hug for you. Will be thinking of you!
AnonymousAugust 20, 2008 at 6:51 pm
I’m not sure what questions to ask, I’m just going to take it easy tonight and hope that tomorrow my head will be clear, I’m so greatful that I have found this website, It will take me time to figure out buy I will. I was wondering if the Prednisone is the right way to go or are their other ways? I guess I will have to talk to the doc, but if anyone wants to jump in and help me with ?’s I will be glad to ask him. Talk to everyone later. ( I have to get my boys ready for FOOTBALL 1st game tonight, I have to miss it but I will be at the next one)
AnonymousAugust 20, 2008 at 7:00 pm
IVIG and Plasmapharesis seem to be the most common treatments for CIDP and GBS. Both work well. My understanding is that prednisone is not as successful or useful in GBS as it is in CIDP. But there are gals on here who know much more than I do. They will clarify for you.
Right now, you are on overload. This is a lot to take in. As I said, take some time, rest up, and we’ll get our thinking hats on here and come up with some questions for you.
Kelly, Dawn, Stacey, what should Cheryl be looking at as questions to ask, etc.
August 20, 2008 at 8:26 pm
YOU MUST GET THE DX CLARIFIED!!!!!!! If it is chronic, or recurring GBS, STEROIDS, (prednisone) ARE NOT RECCOMMENDED. IF he means cidp, steroids are used. Usually a first line of defense is ivig. Some docs use steroids because they are cheaper. They have MANY other side affects other than weight gain and are hard to taper off of. If it is cidp, you will be on a treatment course LONG term, and steroids are not something you want long term. Try and insist on ivig. If ivig was not working alone, some docs introduce4 steroids in addition to ivig. The doc can find a standard protocol for ivig administration based on your weight. He will know this. You just have to know to ask for it. If he gathers that you are educated and learning about your condition, he will be likeley to listen. Hopefully!!!! I will pm you my phone # to call if you like.
Dawn Kevies mom
August 20, 2008 at 10:32 pm
I just pm’d you. If you do not see it, I will respond here as well. If our doc feels you have gbs, steroids are not the way to go. It has always been said steroids are counterproductive. However, I am not sure where, but I think recently there was some thought that this concept of no steroids for gbs could be re-evaluated. Maybe your doc knows of this? I personally would be worried about being the one it gets re-evaluated on. Maybe someone can respond if they recall anything about the change. In any event, ivig DOES work for gbs and cidp. Good luck to you.
Dawn Kevies mom
AnonymousAugust 21, 2008 at 7:06 am
Hi Cheryl! So happy that you finally got a diagnoses so it can now be treated. So I wish you a very fast recovery and hope you get well soon. I’m still in lmbo waiting for a proper diagnoses. Very frustrating stuff! The prednisone will help you alot if it’s CIDP. Not sure about GBS with Prednisone but it will help with the CIDP issues. Unless you keep having constant attacks then IVIG”s are used. But maybe the prednisone will do the trick and get you well again. I wish you my best and hope you have a very speedy recovery. Good luck! Very good luck!
AnonymousAugust 21, 2008 at 7:33 am
I am so glad you did alright with the spinal tap and that you got a diagnosis…I didnt want to say anything sooner b/c I had a pretty bad time with my spinal tap. Hopefully you can get the diagnosis a little more clearly defined. With the breast cancer and your husbands ALS, and now this…you sure have alot on your plate. You have found an awesome website with lots and lots of support.
If they want to set you up with IVIG, maybe ask about the home health care for that. I dont know if that’s an option right away or not. I recently started treatments at home and it is so much better. The nurse comes to your house and brings all the equipment and supplies and it is just so much more relaxed than at a hospital or infusion center. I’m sure you’ve had your share with the breast cancer treatments.
Best of luck as you get your answers. You will get through this, too. One day at a time.
AnonymousAugust 21, 2008 at 9:55 am
As for questions, I totally agree with the earlier posts. Get a definitive diag. Ask alot about the predsnisone, like the others said I am not so sure that this is the tx. you need at this time. I think it needs to be IVIg. I guess Dr’s know best but it wont hurt to ask. If you ask & discuss then the Dr. will know you are informed & have reseasrched your illness.
Dawn Kevies mom seems to be right on & has been down the road a few times she seems to be giving you great advcice. I think she does a lot of research.
Hang in there kiddo & keep us informed.
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