Diagnosed with Mild Case of Gullian Barre Syndrome Many Questions

I was diagnosed with Gullian Barre Syndrome on July 16th by the nuerologist at the hospital at was admitted in. I stayed there a week while they observed me and did many tests. All tests did not show GBS but my symptoms did. The nuerologist told me that she believed I had Gullian Barre but a mild case and opted not to do the IVIG because of many side effects it has. Here are my symptoms: I had shingles and about four days later could barely walk. Legs felt heavy and weak and feet were tingly. My feet only shuffled like baby steps. My arms were tingly and began feeling heavy. Once I was admitted into the hospital the tingling in my arms disappeared and I've had no trouble with movement of my arms. I suffer a tremendous amount of pain in my side, my upper right abdomen and upper right back, pain in legs and knees and pain in shoulders and neck. I am on percacet, gabapentin 300 and tramadol.

The nuerologist was going to do a nerve conduction study but I have no insurance. I was a stay at home with my twin boys and 15 year old daughter. She opted out of doing the test because of lack of insurance.

I have stayed exactly the same, no change better or worse until this past weekend. I began to swell in my legs and feet and pain intensified. My ability to walk really worsened as my balance was way off and I could barely shuffle my feet or stand. I have been like this for three day.

Everything I read on the internet about Gullian Barre symptoms are usually the severe case and I'm really confused about the mild case and just what to think or how to feel about all of this. I am in my third week with GBS and seem to be declining when I have been stabilized these three weeks. Is this normal? How long is recovery? Is there help out there for those without insurance with GBS?

I have been very positive these three weeks as I realize I could have suffered so much worse with GBS, but my positivity is running out. I'm scared. I don't know what to think about all of although this is a mild case it has been very debilitating. I can't take care of my house, cook, or do much for my four year old twin boys. Depending on others is hard for me because I've always been a very strong independant person. I'm already tired of suffering. I've been sick the entire month of July.

I'm also scared of finances. I've not worked for four years because I've stayed home with my twin boys. If this continues, can I apply for disability being that I wasn't working when this happened? I am 39 years old and have always worked up until I had my boys four years ago.

I just found this site today and was hoping that maybe I could find some answers to all of my questions and connect with others that have had or have GBS. Guess I needed a little emotional vent too :) Thanks everyone.

Hi Missa -

Recovery is a long time. I had very quick results after my first Plasmapheresis treatment, I was able to move my leg a few inches the next day. I've been told that I it could be three months until I feel totally normal again. I am much better but like today, I had to leave work and am exhausted for no reason related to physical effort.

I would suggest signing up at the site http://www.wishuponahero.com/ as the foundation is setup to foster individual donations to those in need.

Good Luck

thanks so much for sharing!

hi,

i was diagnosed with a milds case of gbs as well... only to find out 6 mos later that i have cidp. if my first neurologist would have read the book offered by the international association of gbs/cidp, he could have probably prevented my permanent disability. i learned that gbs peaks at 4 - 6 weeks and should get better if treated proper. cidp keeps going and going unless kicked into remission. the type of syndrome you have and how to treat it is usually shown on the amount of protein in your spinal fluid. do you have a para protein etc. . i have been on gamunex c infusions since june 2011. i was loosing my strength very slow to the point at 6 months i was numb from the big toes to my chest. i could not walk. now i can finally go little ways with my walker. i guess i would now do allmost do anything to reverse what happend if i could. please talk to someone that knows about cidp. get a good emg as a baseline, and keep record of your spinal fluid test. there are other deseases and cancers that mimic this. there is a support group for cidp. i wish you well and hope you get the help you need! the pain that you are feeling is the destruction of your nerves. after 6 mos of nerve/musscle pain and trying out lyrica and other chemicals that made my feet swell and made me dizzy, the ivig infusions on a scheduled basis were helping me, i believe thats when the destruction stopped and the healing began.

Hi Missa,

Sorry to hear your not well. Did they take a spinal tap test to determine the GBS? that's what's required otherwise it could be another illness. If they did, IVIG and plasmapheresis treatments are done for GBS patients. Always remember Missa you can never be turned away, hospitals and doctors should take you no matter what. Hospitals have assistance programs which you can get through the case worker at the hospital. Also check this link out for financial assistance in any way you need: http://rarediseases.org/patients-and-families/patient-assistance check your government office where you live for government medical insurance, you may qualify for it since you don't work and have a family. I'm ambassador to NORD (Natl org for rare disorders) and a GBS advocate in Austin, Texas. I was diagnosed with GBS 4 years ago. I'm 1 out of 7 in the world with the most severe case, so if I could survive you can too, I will keep you in my prayers, email me at ■■■■■■■■■■■■■■■■■■, my website is: www.barbrasonnenhernandez.com keep in touch and let me know how you are doing and if I can assist you further. "You are not alone". Take care and God bless you!

Thank you for your response and I'll check out that site. Take Care...hope you recover soon.

DLARLICK said:

Hi Missa -

Recovery is a long time. I had very quick results after my first Plasmapheresis treatment, I was able to move my leg a few inches the next day. I've been told that I it could be three months until I feel totally normal again. I am much better but like today, I had to leave work and am exhausted for no reason related to physical effort.

I would suggest signing up at the site http://www.wishuponahero.com/ as the foundation is setup to foster individual donations to those in need.

Good Luck

Hi mdolich,

Your statements about CIDP are exactly what I'm afraid of. I had shingles while at the hospital and they didn't want to do the lumpar puncture. Nuerologist was gonna do nerve conduction studay the day after I was released from the hospital but did not because of lack of insurance. I've had no treatments just medication. My nuerologist diagnosed me with GBS based on my symptoms. I have an appointment with her on August 16th. I'm going to research all the information you've mentioned and thanks for your reply. Take Care.

mdolich said:

Hey Missa, I was first dianosed GBS but then re-diagnosed CIDP after several relapses. Usually GBS is a sudden onset, I turned off the TV one night and woke up totally paralyzed from the waist down. I have heard of mild cases but nine times out of ten it turns out to be CIDP. CIDP is the considered the Chronic Cousin if Gullian Barre'. It's onset isn't as sudden as GBS, it's more of a slower progression over several weeks. If you'll go to my profile and look at the past posts that i've posted you'll find one with information about a Free magazine called IG Living and some Free booklets on GBS and CIDP. They are full of valuable information on GBS/CIDP. There is also some facebook support group websites I listed where we talk about CIDP and GBS. Good Luck, keep us posted.

Hi babsmiracle,

I'm sorry you had to go through that. It must have been absolutely terrifying. I think it's very positive that you are using your experience to help others. You are right, I can get through this. It's just scary and hard when your life changes so suddenly. I've spent a lot of time thinking about people that are completely paralyzed, have ms, or in a wheel chair. What a difficult experience in so many ways. My compassion for others has certainly grown through this because my eyes have been opened.

I will check out all the information you gave me and thank you for it. I was looking for help and you've provided me with a lot of information. You take care too and God Bless You.



babsmiracle said:

Hi Missa,

Sorry to hear your not well. Did they take a spinal tap test to determine the GBS? that's what's required otherwise it could be another illness. If they did, IVIG and plasmapheresis treatments are done for GBS patients. Always remember Missa you can never be turned away, hospitals and doctors should take you no matter what. Hospitals have assistance programs which you can get through the case worker at the hospital. Also check this link out for financial assistance in any way you need: http://rarediseases.org/patients-and-families/patient-assistance check your government office where you live for government medical insurance, you may qualify for it since you don't work and have a family. I'm ambassador to NORD (Natl org for rare disorders) and a GBS advocate in Austin, Texas. I was diagnosed with GBS 4 years ago. I'm 1 out of 7 in the world with the most severe case, so if I could survive you can too, I will keep you in my prayers, email me at ■■■■■■■■■■■■■■■■■■, my website is: www.barbrasonnenhernandez.com keep in touch and let me know how you are doing and if I can assist you further. "You are not alone". Take care and God bless you!

Hi Caroline,

Your statements about CIDP also are exactly what I'm afraid of. I had shingles while at the hospital and they didn't want to do the lumpar puncture. Nuerologist was gonna do nerve conduction studay the day after I was released from the hospital but did not because of lack of insurance. I've had no treatments just medication. My nuerologist diagnosed me with GBS based on my symptoms. I have an appointment with her on August 16th. Thanks for your reply. Take Care and Best Wishes to you.

Caroline Baraga said:

hi,

i was diagnosed with a milds case of gbs as well... only to find out 6 mos later that i have cidp. if my first neurologist would have read the book offered by the international association of gbs/cidp, he could have probably prevented my permanent disability. i learned that gbs peaks at 4 - 6 weeks and should get better if treated proper. cidp keeps going and going unless kicked into remission. the type of syndrome you have and how to treat it is usually shown on the amount of protein in your spinal fluid. do you have a para protein etc. . i have been on gamunex c infusions since june 2011. i was loosing my strength very slow to the point at 6 months i was numb from the big toes to my chest. i could not walk. now i can finally go little ways with my walker. i guess i would now do allmost do anything to reverse what happend if i could. please talk to someone that knows about cidp. get a good emg as a baseline, and keep record of your spinal fluid test. there are other deseases and cancers that mimic this. there is a support group for cidp. i wish you well and hope you get the help you need! the pain that you are feeling is the destruction of your nerves. after 6 mos of nerve/musscle pain and trying out lyrica and other chemicals that made my feet swell and made me dizzy, the ivig infusions on a scheduled basis were helping me, i believe thats when the destruction stopped and the healing began.

hi again,

i would like to add that you are very fortunate to be diagnosed so early. it is important to get a really good emg done and to check for the existance of a paraprotein, i hear that treatments will vary on those specific results. you can still reverse damage, but you need to know what you are dealing with. i hope you get support and contact the international association for gbs/cidp they have ways to guide you to the right support. you need to stay on the task now, even though you feel week to make the best out of this experience. You are welcome to ask me any questions. i hope you can get help with your medical bills soon!


missa said:

Hi Caroline,

Your statements about CIDP also are exactly what I'm afraid of. I had shingles while at the hospital and they didn't want to do the lumpar puncture. Nuerologist was gonna do nerve conduction studay the day after I was released from the hospital but did not because of lack of insurance. I've had no treatments just medication. My nuerologist diagnosed me with GBS based on my symptoms. I have an appointment with her on August 16th. Thanks for your reply. Take Care and Best Wishes to you.

Caroline Baraga said:

hi,

i was diagnosed with a milds case of gbs as well... only to find out 6 mos later that i have cidp. if my first neurologist would have read the book offered by the international association of gbs/cidp, he could have probably prevented my permanent disability. i learned that gbs peaks at 4 - 6 weeks and should get better if treated proper. cidp keeps going and going unless kicked into remission. the type of syndrome you have and how to treat it is usually shown on the amount of protein in your spinal fluid. do you have a para protein etc. . i have been on gamunex c infusions since june 2011. i was loosing my strength very slow to the point at 6 months i was numb from the big toes to my chest. i could not walk. now i can finally go little ways with my walker. i guess i would now do allmost do anything to reverse what happend if i could. please talk to someone that knows about cidp. get a good emg as a baseline, and keep record of your spinal fluid test. there are other deseases and cancers that mimic this. there is a support group for cidp. i wish you well and hope you get the help you need! the pain that you are feeling is the destruction of your nerves. after 6 mos of nerve/musscle pain and trying out lyrica and other chemicals that made my feet swell and made me dizzy, the ivig infusions on a scheduled basis were helping me, i believe thats when the destruction stopped and the healing began.

I went to the nuerologist today and I can barely walk, I mean baby baby steps inches at a time. My muscles shake from weakness in my legs. She didn't do any further testing but now feels this isn't gullian barre because my reflexes are still very good. At the hospital they did two mri's, xray, and a ctscan. They showed nothing. She said I definately have nueropothy but she doesn't know what's causing it and that shouldn't cause me problems walking. Where did the nueropothy in my legs come from? This all started with shingles on the right side of my abdomen. That causes nueropothy but only where shingles are??? She said she had to wonder if stress has caused this???? I'm screaming inside now. She did lab work and I'm going for a bran mri to see what she finds now. I'm telling you all this because I'm scared. I'm scared I'll become parayzed in my legs. This has been going on for a month now. Could this actually be cidp and it's moving slowly?? I have pain in my lower back. Shaky hands at times and numbness in my hands and then all the problems with my legs. I feel chills or something that runs down my legs. I have nerve twitches in my legs, feel like somethings crawling on them sometimes, muscle cramps, pain in my legs, sharp pains like stabs in my knees and pins and needles. This all occurs randomly but it does happen to me and I firmly believe all this can't be due to stress. Sorry to go on and on but thought you might could tell me what you think. I just want to know what's going on so I can try to get better. Thanks for listening.

mdolich said:

Hey Missa, I was first dianosed GBS but then re-diagnosed CIDP after several relapses. Usually GBS is a sudden onset, I turned off the TV one night and woke up totally paralyzed from the waist down. I have heard of mild cases but nine times out of ten it turns out to be CIDP. CIDP is the considered the Chronic Cousin if Gullian Barre'. It's onset isn't as sudden as GBS, it's more of a slower progression over several weeks. If you'll go to my profile and look at the past posts that i've posted you'll find one with information about a Free magazine called IG Living and some Free booklets on GBS and CIDP. They are full of valuable information on GBS/CIDP. There is also some facebook support group websites I listed where we talk about CIDP and GBS. Good Luck, keep us posted.

Hi,

I'm wondering if you can help. I still can't get the nerve conduction test done because of insurance and there has been no lumbar puncture done. I was told they thought I had a mild case of gbs because of my symptoms and that they were brought on after shingles which can lead to gbs. I went to the nuerologist today and I can barely walk, I mean baby baby steps inches at a time. My muscles shake from weakness in my legs. She didn't do any further testing but now feels this isn't gullian barre because my reflexes are still very good. At the hospital they did two mri's, xray, and a ctscan. They showed nothing. She said I definately have nueropothy but she doesn't know what's causing it and that shouldn't cause me problems walking. Where did the nueropothy in my legs come from? This all started with shingles on the right side of my abdomen. That causes nueropothy but only where shingles are??? She said she had to wonder if stress has caused this???? I'm screaming inside now. She did lab work and I'm going for a bran mri to see what she finds now. I'm telling you all this because I'm scared. I'm scared I'll become parayzed in my legs. This has been going on for a month now. Could this actually be cidp and it's moving slowly?? I have pain in my lower back. Shaky hands at times and numbness in my hands and then all the problems with my legs. I feel chills or something that runs down my legs. I have nerve twitches in my legs, feel like somethings crawling on them sometimes, muscle cramps, pain in my legs, sharp pains like stabs in my knees and pins and needles. This all occurs randomly but it does happen to me and I firmly believe all this can't be due to stress. Sorry to go on and on but thought you might could tell me what you think. I just want to know what's going on so I can try to get better. Thanks for listening.

Caroline Baraga said:

hi again,

i would like to add that you are very fortunate to be diagnosed so early. it is important to get a really good emg done and to check for the existance of a paraprotein, i hear that treatments will vary on those specific results. you can still reverse damage, but you need to know what you are dealing with. i hope you get support and contact the international association for gbs/cidp they have ways to guide you to the right support. you need to stay on the task now, even though you feel week to make the best out of this experience. You are welcome to ask me any questions. i hope you can get help with your medical bills soon!


missa said:

Hi Caroline,

Your statements about CIDP also are exactly what I'm afraid of. I had shingles while at the hospital and they didn't want to do the lumpar puncture. Nuerologist was gonna do nerve conduction studay the day after I was released from the hospital but did not because of lack of insurance. I've had no treatments just medication. My nuerologist diagnosed me with GBS based on my symptoms. I have an appointment with her on August 16th. Thanks for your reply. Take Care and Best Wishes to you.

Caroline Baraga said:

hi,

i was diagnosed with a milds case of gbs as well... only to find out 6 mos later that i have cidp. if my first neurologist would have read the book offered by the international association of gbs/cidp, he could have probably prevented my permanent disability. i learned that gbs peaks at 4 - 6 weeks and should get better if treated proper. cidp keeps going and going unless kicked into remission. the type of syndrome you have and how to treat it is usually shown on the amount of protein in your spinal fluid. do you have a para protein etc. . i have been on gamunex c infusions since june 2011. i was loosing my strength very slow to the point at 6 months i was numb from the big toes to my chest. i could not walk. now i can finally go little ways with my walker. i guess i would now do allmost do anything to reverse what happend if i could. please talk to someone that knows about cidp. get a good emg as a baseline, and keep record of your spinal fluid test. there are other deseases and cancers that mimic this. there is a support group for cidp. i wish you well and hope you get the help you need! the pain that you are feeling is the destruction of your nerves. after 6 mos of nerve/musscle pain and trying out lyrica and other chemicals that made my feet swell and made me dizzy, the ivig infusions on a scheduled basis were helping me, i believe thats when the destruction stopped and the healing began.

Hello Missa,I was told I have mild GBS also. My legs and arms feel so heavy and I feel as if I am walking against resistance.I get sharp pains in my arms and legs and fingers and toes. I get so exhausted too. Because of neck and back surgery, I am already on Neurontin and Robaxin, a muscle relaxant. I also take Potassium and Vitamin D..I have tingling in my extremities and face, muscle spasms, twitching and tremors in my hands. After two weeks, I thought I was a little better and increased my activity. My symptoms and the fatigue got worse. It feels like an effort to walk and sit up. I also get short of breath as my body feels weighed down. My reflexes are absent n my arms and legs. I get very tired speaking and have bad headaches. I have to rest all the time or I get worse or so exhausted, I just can't stand up anymore. I am by myself and sometimes it is very frightening as I think I may become paralyzed. Also, I just cannot get out to do what I need to do like get groceries, etc or prepare meals. I look perfectly normal, but don't feel it. I didn't feel this bad when I had chemo for breast cancer. I want to go away in late June. My neurologist says I will be able to, but I am not so sure. I am semi-retired and had to turn down several days of work. There is no way I could take care of a family feeling like this. Normally, I am very social and go out all the time, but that is not possible now. I hope things get better for you, Missa. Prayers and hugs to you and everyone else. Good luck.