I had no support dealing with GBS. My doctor told me I would be better in three weeks and I beleaved him. Why would I need support I could handle three weeks. My first support was this forum and my wife found it. My first post took a very long time because my finger would not work and I was pressing the keys too hard or to softly. This forum ws my lifeline for many months and I still visit here often after 18 months.

This site is my main GBS support group. I found it after many months of onset GBS. Gradual acute onset GBS immediately followed my 2007 flu shot. There was no info or answers from the medical people and agencies I turned to, while I suffered and endured the constant agonizing nervous system pain and severe muscle contractions, paralysis and crippling of arms & legs, effects of stroke, and all the rest that comes with GBS.

After many weeks of onset, I found a flu shot pamphlet from prior years which mentioned a rare reaction–GBS, and I then researched the internet for GBS, and found my symptoms. I found other sites which gave out statistics and other info about GBS, and a couple of support group sites. On one site, the info about GBS and the Canadian Medical Association is off-limits to the public, and only the medical professionals have access to it. I’ve settled in here over the past few years, and am very glad for the mutual support and interaction with others in this condition. The upfront knowledge and experience from others has been my mainstay during this terrible ordeal.
I don’t know how I would have survived without it.

Sonny,

I’m not from Ca.,but you can ask questions, vent or tell your experiences. There are many here that will talk to you and try to help.

Welcome,

Shirley
GBS11/07

Hey…i live in Southern CA. You can ask questions in this forum. There are lots of people with great knowledge to answer them!

Thanks.

Welcome, Sonny!!!

Sonny ~ welcome to our big family. Talk, ask questions, whatever you need. We don’t always have answers but we sure do understand! There’s always someone who has “been there, done that”. I have yet to meet, in person, someone else with GBS/CIDP (I’m post 13.5 yrs) but wow, the friends I have here 🙂

Sonny,

It’s nice to meet you. I found when I came down with CIDP that I also lost some friends, the ones who stuck by me are who I now consider my true friends. I am still friendly with the others though not as close. You will find many of us have had the issues, experiences, problems etc that you have or may be experiencing. We are all friends and survivors here and will do anything we can to help you. Post as little or as much as you want to and we will respond. Also if you go to the search menu on the top toolbar you can check the old posts for an issue you may have. If you need anything else just ask 🙂

Jerimy

Hi there! I’m new at this, too. Actually, i am still waiting for a diagnosis, although my neuro says he’s pretty sure i have GBS (the PCB variant, which involves more upper body than lower body). I’m waiting to deliver my baby (july 30th) before i can have the tests to officially diagnose my condition and recieve any treatment.

I understand how you feel, as far as socializing goes. It is hard because i don’t feel like the same person, and i don’t have much to talk about anymore, because i don’t get out much and i can’t work, yet. But, you know, i think i let this bother me more than my friends and family do. They are the same as before, for the most part, and i think it is me who feels different around them. I just try not to get down on myself, and i try to laugh and joke around with them, especially about my health, because it kinda relieves the wierdness in the air. I think it lets them know that i’m still me, and that they can talk to me or ask me questions about my health. I try not to feel or look sad. If i am having a bad day, i let someone know, “Yeah, sucky day, but what the heck is one to do? So, gotta beer”? I’m pregnant, so that line always eases the tension.

I always wonder what methods other people use to ease the tension, stress, worry, etc. Any ideas out there?

Welcome to the people that have just found this forum. I hope it will help you as much as it has helped me. I found that not just reading the posts but also reading the “On the lighter side” posts and the photos and games kept me sharing with the humor and wit of the others. Seeing them enjoy sharing what they have found just was like receiving a daily get well card from a friend. People do not understand that just because you look good on the outside that you don’t feel so hot on the inside. Recovery takes longer than we expected. I can not keep up to my friends. Many many times they don’t innvite me to join them. That hurts but I understand. Even family does not understand and that hurts, but I understand. I was like this with friends that were ill and I did not understand how they really felt. Now, I know the next time to have patience and call a friend more often. I have moved on to doing several hobbies that get me around people and out of the house. I use my library more and have joined a few clubs that have regular meeting that I can attend or read about in their newsletter. Hope you find something to help you keep a possitive attitude too!

I agree. I don’t have a ton of friends, because i have a huge, tight-knit family that i spend most of my time with. Family can’t really wierd out on us as easily as friends can. I have a lot of work-friends, but i only talk to 3 of them outside of work. We are all nurses, so we don’t get creeped out about health problems as much as people who are not familiar with the healthcare world. So, I’m llucky in that way.

I used to try to hide how bad i felt because i didn’t want to be negative. My family would say, “Look at me”, and i’d be busted immediately. They know just by my body language if i am lying, so i decided not to lie anymore, and just make light of the situation. Now im honest, but laugh at myself too.

The problem im having now, is that my family doesn’t ask how i feel as much, and they don’t ask as many questions, either. I feel like this is getting old to them and that they are sick of hearing about it. I know they care, but it bumms me out because i feel like i don’t have anyone to talk to anymore. I mean, I can always talk to them, but it seems like they’ve heard it all before and aren’t really interested. Maybe it is because i don’t look like im dying anymore that has caused them to lose interest? Or maybe i talk about this too much? That ‘s why im soooo happy i found this site! Thank you all!

Jamie,

Keep coming here. We are all in this together. I had GBS 25 years ago, and I get what you mean about family thinking you are over it and wanting you to move on. They stop showing interest. I am having quite a few problems with residuals which is why I came back here. My family doesn’t get it, especially now that it is 25 years later. I sometimes think they think I am making it up or something, so by coming here, I get it validated and it helps me see I am not going crazy. 😀

Keep well.

Janet,

Thanks for your response. I wish you wouldn’t have to feel the same way i do, but it does feel good to know im not alone.

This illness almost landed me in a divorce (before it became obvious that i was insanely ill). My husband is a wonderful, hard-working man, but his communication skills are terrible. You know how you get that awkward tension in the house, like you hate one another, but you have no idea why? That is what we went through, and we ended up seperating, although just for one week. I had no idea what his problem was.

It ended up that he was irritated that i wasn’t keeping up on the house, and that i slept alot. I would tell him every day, “I think I’m gonna do this, and this, and this”, and then i wouldn’t get anything done. Then, when he got home, I’d tell him how i planned on doing so much, but couldn’t manage to get anything done. He worked twice as much as me (and i worked full-time) and he was sick of hearing it, although he never complained, not even once. All of this came out in counseling, and we are wonderful now, but deep down, i still worry about that issue.

I still feel the need to explain myself, but he asks me not to. He says, “You don’t have to tell me. The way i see it is, if you can clean, then you will. You will do what you are able to do”. But, he is one of those people who shows and feels love through “doing”, and he takes great pride in what i can DO, not what i say, or by touch, etc. He would always tell his friends and coworkers, “Jamie can do this and that…”, but I can’t DO much anymore, so it scares me a little, especially when it seems like my family is becoming desensitized to the seriousness of my illness.

Oh gosh Jamie, I sure do understand how this is for you!!! It is hard for those who love us to undersatand. But first, you should never feel bad or have to appologize for what you can/cannot do. As to the rough time you had with your marriage, this illness puts a lot of stress on all of us, including our families and spouses. I was 29 years old when I got ill and had four children, 9,7,4,1. One of them is affected by a disability so the stress on my hubby was tremendous. He was trying to care for me, look after the kids and house and it was overwhelming. But we survived and have now been married 35 years. Do I wish I had done some things differently back then? Certainly. But I am a firm believer in that you do the best you can with the information and tools you have. And as you learn new skills and tools, then you begin to use them. Counselling is one way of getting new skills.

It sounds to me like your husband truly does understand. That is why he tells you you don’t need to explain to him. He gets it!!! Boy, wouldn’t we all want that? Give him a big hug and kiss for me.:D You will both learn as you grow in your marriage that there are many ways to be proud of each other. Do what you can and let him be proud of the little things.

Take care and please keep in touch in with me. I understand.

See Jamie I told you they are wonderful here and do understand. Have you contacted the foundation and had any information sent to yourself? There is a very good book for caregivers too in that package. I know exactly how you feel as the others do. My Mother has never visited me or offered to help in any way. Just yesterday on the phone she asked if there was anything she could do. So it is not just you that is not understood by others. It takes special people to be caregivers. We don’t thank them enough. Some don’t say much but they volunteer their time. Some give us a phone call to check on us, but don’t visit. Some will shop for us when ever needed. Many don’t take the time to listen but I think that is just not in GBS but also in life. Many live in a fast paced life. WE live in slow paced bodies for now. Give it time to heal and you will get on a routine that your body can handle. Hugs! Have a great weekend! :p

You are both awesome! Yeah, i definitely feel lucky to have my hubby! Sometimes, when i’m grumpy, i think back to when he hated me for not keeping up on the house and didn’t believe me when i would tell him there is something very wrong with me. I get mad and self-conscious, and when im really in a bad mood, i think to myself, “I hope he feels like a jerk for the way he was back then”. I know it is horrible, but im just being honest.

These days, he’s great. He just doesn’t like to talk about things; talking stresses him out. Silence and isolation are his tools to get through tough times. I’m the opposite, so it has taken counseling for both of us to see where one another is coming from. I know now that him ignoring me when im crying (i rarely let him see me cry) is not “ignoring” to him. it is giving me the space he thinks i need to deal with the issue on my own.

Yep, I’ll give him a big hug and kiss for you! He’s a hottie, too! He doesn’t believe it when i say he’s gotten hotter since he’s turned 30 (he’s 32 now). I told him i used to be his arm candy, and now he’s mine! I desperately want to go back to my old self again, so that is bothersome, but i still like being me!

About the gbs info packet, I didn’t know there was stuff like that available. And, another problem is that i havent officially been diagnosed yet, so i dont know how much help i can get. im hoping to find out more in july or august after the baby is born. I’ll check into it, though. Thanks for the advice!

Not in CA but willing to talk

having a hard time right now. My body just won’t catch up to my mind. So much i want to do but having a hard time convincing my muscles to participate. My Legs are hurting. I am walking with forearm crutches supposed to get a quad cane. Went out to dinner last night and had to take the lightrail system and a wheelchair. Would have been too much to walk. Exhausted today but can’t get my family to understand.Had my achilles tendons released and wear AFO’s The are pulling against my feet and ankles. supposed to get hinged ones soon. they are supposed to allow me to flex my feet some.(as much as they can after the release),

hi wassie & welcome,

i am not aware if botox can help migraines, but this is the 1st i ever heard it even mentioned. have you tried the meds that help migraines? they seem like the more common [accepted?] Rx to me. take care. be well.

gene gbs 8-99
in numbers there is strength

i take zomig for my migranes and i’m 5 years post gbs. i’ve never heard of botox injections for migranes. good luck.
deb

Hi Wassie,

My fiance Ben is almost two years post GBS as well and was also just diagnosed with having migraines. His doctor put him on Verapamil, and it seems to work for Ben.

Hope this helps!

Shannon

My understanding of Botox is that it “deadens the nerves” in the face so that you don’t make wrinkles by smiling/frowning ‘to much’! So possibly(?) it would deaden the nerves in the head so that you would not feel the migraine. Other Rx work with the blood vessels to stop the migraine. Good luck, with hugs 🙂

Wassie,

A friend of mine has been prescribed Botox for her migraines. She said the first treatment didnt do that much for her, however the second treatment did seem to help a great deal. Her third lot seems to have had not much of an effect though. I cant remember how long it was between treatments, I could be wrong in saying every 2 to 3 months, but I can find out from her if I see her tomorrow, and will also ask if she feels it is worth while.

Sorry, I didnt even answer your question ….. I really dont know how it would effect us at all.

Can’t say in general how it will effect anyone else with GBS, but I have had Botox twice (not for migraines, just for vanity 😉 ) since GBS and had no problems.

Suzanne

I was just wondering if you could get your insurance company to pay for the Botox injections if you had a prescription? That would be nice! 🙂

Suzanne – I bet you look great!

Shannon

Shannon,

I think some insurance companies do pay for Boxtox, when it is prescribed for theraputic reasons. I believe that Botox is used to treat some other kinds of neurological problem in addition to migraines, although I don’t remember exactly what. I overheard a nurse at my neurologist’s office making an appointment for someone to have Botox, so I asked about it. Unfortunately, cosmetic Botox treatments aren’t covered by insurance 🙁 .

Suzanne

Suzanne –

When I’m ready to have Botox in a few years, I’ll have to start seeing a doctor for headaches and see if I can get insurance to cover it!

Shannon

hi wassie, i was in line to start botox injections for migraines before i came down with gbs. but since gbs i haven’t had alot of migraines. i also noticed since all of my relapses that my nerves in my body especially the sensory ones, have reduced the tension in my skin, the wrinkles and tense expressions aren’t in my face now. i think this has alot to do with the migraines being less frequent. i do have severe migraines with my relapses though, and i use relpax, works well. all though i do have headaches, the one i have now has ben going on for 3 days now, aren’t as intense as my migraines, and they aren’t the same character wise either. these start from the pain in the back of my neck and go on the leftside only around to my eyes. they go from sligh pain to intense for a few mins and then return to low pain again, this goes on all the time at different times of the day.
i think insurance will only pay for botox injections if you have tried and had no relief from all the other profalactant meds first. in my opinion i wouldn’t use botox injections after gbs, you never know how your body will react to the botox when it gets into your body. it might cause the immune system to go haywire again, i think that is in the information sheet that you have to sign to get the treatment. make sure your neuro has treated gbs patients with this type of therapy before trying it. it really isn’t worth the risk to your health, other therapies are available that aren’t as risky but will work on migraines just as well. biofeedback therapy is great for migraines and can be helpful with gbs recovery/maintance also. and no meds and no bad side effects with it either, it is great for other muscle disease and problems too. make sure you do your research before doing the botox therapy. take care.

Wassie,

I spoke to my friend about her Botox injections. She has them every three months, and it is covered by her insurance (Kaiser) because it has been prescribed for migraine. She says she thinks that the more she has (its her fourth), the better it seems to work – she has just had 10 days without a migraine. Unfortunately she has never had GBS, so I cannot speak as to what effect, if any, it has on people who have had GBS in the past.

Shannon,

I don’t know exactly where the Botox shots for migraine headaches are given – somewhere in the head I assume, but don’t know if it’s the same places you would get Botox injections for cosmetic reasons.

Maybe Ali knows. Ali, did your friend tell you where the doctor does the injections?

SuzyQ

botox injections are given in the face—in all the nerves across the forehead, and down the sides of the face sometimes including around the whole ear. it is not a pretty site afterwards and is not a pleasant procedure. 🙁

My friend was saying that for her headaches, they were given at the back base of her skull as well. However, she did say she didnt mind it too much.

Welcome back, Veera! No need for shame, just smiles that you found your way around again 🙂

Glad you found your way back again! Also good to hear you are doing so well. 🙂

Welcome back Veera, glad to see that you found us.

Welcome back Veera, it’s nice to hear from you again 🙂

Jerimy

hee haww

soapy

It’s so good to see you made it back here. You and your cats were in my thoughts because I love animals! I wanted to email and let you know about forum, but couldn’t.

I also welcome you back to he forums. We are glad to hear you are doing so well.
Mary Ann