guillain-barre syndrome??

[dylandufault]

Hey Idk if anybody knows what this is but I was curious as to if anyone who works out was diagnosed with this disease.

 

[vidapreta]

Hey Idk if anybody knows what this is but I was curious as to if anyone who works out was diagnosed with this disease.

It's from the flu shot and It's pretty rare.

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[dylandufault]

I've actually got it. I'm hospitalized right now for it. And I was just curious as to if anyone else on here has it or had it. I've had it for 2 weeks now and lost 20 lbs. So I wanted to know what progress ppl made back to their original weight.

 

[vidapreta]

I've actually got it. I'm hospitalized right now for it. And I was just curious as to if anyone else on here has it or had it. I've had it for 2 weeks now and lost 20 lbs. So I wanted to know what progress ppl made back to their original weight.

Did you get it from the flu shot??

 

[RipdnTxs]

I had it when I was 19, and until we figured it out I thought I was dying or had a stroke. This was in 1986, and I have never taken a flue shot since. I was very lucky, my case was pretty mild and I was in the Hospital only a little over a week. My Aunt (I,m adopted so no genetic connection) got it a year later and was Hospitalized a year and a half and had to learn to walk,talk, and feed herself again. Not trying to scare ya, I,m sure the Docs. have told U how serious this can be. My Doc. at the time gave me shock treatments which were horribly painful, and then there was the spinal tap, those are always fun.... Good luck to U on this. I lost about ten lbs. when I had it, the day I left the Hospital the Doc. told me to be as active as possible to speed recovery, I was 19 so I recovered quickly. Keep us posted...

 

[dylandufault]

They told me I had mild-medium case and today started my first day of rehab and walking with a walker. I was scared when it first started too. I'm a guy who works 12 hr days and goes to the gym 3-4 days a week so I was always active and then this hit. It's amazing how each person acts differently and recovers differently

 

[RipdnTxs]

Yea, I had terrible balance, bad vision, talked different, and one thing I remember was one of the nights before I was diagnosed my hands began to burn and just pulse with pain. It was really scary when the Doc. looked me over and then asked me to leave the room so he could talk too my parents, I was like "thats it hes telling them I have a short time to live". How old r U ??? Keep ur head up, sounds like U have turned the corner on it so just give rehab all U got, every time.... By the way, what symptoms did U have prior to being diagnosed ???

 

[andongp]

Guillain-Barre Support

New here. Got hold of this thread 'coz of Guillain-Barre syndrome.

From what I learned so far, GBS is a little understood auto-immune disease or when the body's immune system starts attacking itself. Yes, vaccination is one of the suspects but there are several other other causes. Full recovery is possible, worst outlook is it may also develop to a neuropathic disease, such as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP).

What surprises me is despite its rarity, many of the cases involve otherwise healthy people such as athletes.

I find belonging to a patient support group, such as guillainbarresupport.org, very helpful. Seek the site and sign up if you are suffering from GBS.

 

[andongp]

Yea, I had terrible balance, bad vision, talked different, and one thing I remember was one of the nights before I was diagnosed my hands began to burn and just pulse with pain. It was really scary when the Doc. looked me over and then asked me to leave the room so he could talk too my parents, I was like "thats it hes telling them I have a short time to live". How old r U ??? Keep ur head up, sounds like U have turned the corner on it so just give rehab all U got, every time.... By the way, what symptoms did U have prior to being diagnosed ???

You may want to seek the site guillainbarresupport.org and sign up. Your experience having survived GBS will help others.

 

[dylandufault]

I'm 24 years old. I literally just woke up one Monday nearly 3 weeks ago and was just slightly tired and felt drained. I thought it coulda been not eating good over the weekend or something. Drank a few redbulls throughout the day and just felt the same.

 

[dylandufault]

And then each day after then just got more fatigued and then started noticing I couldn't lift my arms up as much past my shoulders. Then I fell backwards and couldn't get up by myself for the life of me. My gf had to assist me.

 

[RipdnTxs]

That off balance thing is pretty scary and confusing when it happens. How is rehab going, are things improving with therapy ????

And then each day after then just got more fatigued and then started noticing I couldn't lift my arms up as much past my shoulders. Then I fell backwards and couldn't get up by myself for the life of me. My gf had to assist me.

 

[dylandufault]

Therapy is ok. I see much improvement on my arms and barely anything on my legs. I still get a lot of cramps and numbness and tingling in my calf's and down. I talked to my dr and he said its just the nerves repairing itself.

 

[RipdnTxs]

My Doc. back when I had it gave me eletrical shock therapy to stimulate the nerves to fire and speed recovery. I cant say for sure if that helped or not, just wondering how they address rehab now. The numbness was mostly in my hands, weird how affects us all a little different... Have they given U any idea how long ur rehab will take ????

 

[dylandufault]

They didn't do electric shock therapy on me but they did electric shock tests to see exactly what my nerves are at. The length that sends the messages.

 

[dylandufault]

Your right I really really dislike how much different it affects everyone. Makes it a bit difficult to determine what your own results will be

 

[dylandufault]

News update. I'm regressing. They wanna transfer Me out of rehab back to icu to monitor my breathing and do more plasmapheresis treatments

 

[vidapreta]

News update. I'm regressing. They wanna transfer Me out of rehab back to icu to monitor my breathing and do more plasmapheresis treatments

Sorry to hear that.. Sometimes these things take a little time before you're back on your feet 100%

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[RipdnTxs]

That really sucks man, I hate to hear ur regressing. Keep fighting and keep us posted. I really wish U the best, this makes me realize how lucky I was all those years ago.....

News update. I'm regressing. They wanna transfer Me out of rehab back to icu to monitor my breathing and do more plasmapheresis treatments

 

[vidapreta]

That really sucks man, I hate to hear ur regressing. Keep fighting and keep us posted. I really wish U the best, this makes me realize how lucky I was all those years ago.....

You recovered 100%

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[dylandufault]

Soo I'm in about my 7th week of rehab. I'm starting to be able to stand up on my own as long as I have something to hold onto at a certain height. Walking is getting better but still need a rolling walker. Hamstrings and glutes still weakest part of my body really. Need to work on that more

 

[vidapreta]

Soo I'm in about my 7th week of rehab. I'm starting to be able to stand up on my own as long as I have something to hold onto at a certain height. Walking is getting better but still need a rolling walker. Hamstrings and glutes still weakest part of my body really. Need to work on that more

Keep working at it and stay strong, you'll get there.

 

[RipdnTxs]

Glad to get an update from ya, I was wondering how U were doing. Hang in there, sounds like U r improving little by little. Its easy from where I,m setting, so I feel for ya, just keep at it.... keep us posted on progress and good luck..

Soo I'm in about my 7th week of rehab. I'm starting to be able to stand up on my own as long as I have something to hold onto at a certain height. Walking is getting better but still need a rolling walker. Hamstrings and glutes still weakest part of my body really. Need to work on that more

 

[rmaini]

Just came across this thread as I was diagnosed with it 3 years ago. Still having issues with balance, numbness, and tingling in hands and feet. I can't complain because at the time, doctor's told me my recovery would take years if that since I had an extreme/severe case. My main issues right now are from my knees down to feet. Anyways, glad your improving 7 weeks in. Wish you the a fast recovery.

 

[thyrod]

Bro, I'm really sorry to hear about this misfortune. Best of luck to both of you for a speedy recovery.

 

[dylandufault]

Yeah honestly I was moved to a sub acute rehab facility and Cuz of the move I had 3 days off. One I started therapy again I saw the biggest leap in progress. I was so ecstatic when I stood up by myself without someone helping. Im starting to really get my tris and biceps back. I can't wait til I'm fully healthy enough to go back to the gym and start working out for real. I used to hate when going to the gym and see very little progress. But with this illness and seeing how long it takes, I understand how precious gym time is haha. But yo I appreciate the shout outs everybody and again anybody who's had this is way more then welcome to talk and tell their stories.

 

[RipdnTxs]

Sounds like ur on ur way back.... With ur attitude U will make it all the way back, hang tough.......

 

[dylandufault]

Sooo since I last responded I have started walking with a small base 4pt. cane. I still need a lot of work on my balancing. Any suggestions on how I can improve my balancing by simple exercises?!?

 

[rmaini]

I wish I still had the exercise sheet I used to use at home. Here are some examples of exercises I did at home:

Side Leg Raises - Hold onto the cane with one hand and lift the opposite leg. Alternate between legs.
Front Leg Raises - Same as above but Raise the leg forward
Back Leg Raises - Same as above but kick leg backwards.
Stair climbing - Hold onto railing and go up and down stairs.
Hip raises - Lying flat on your back and thrusting your hips up.
Pushups - I did them with my knees on the floor, girlie pushups
Situps.

I did this for several months. Hope this helps.

 

[RipdnTxs]

Good to hear from ya.... I personally didnt get NEARLY as bad as you, but the exercises listed are good ones to start with. Bug ur rehab people for more solo work if they feel its warranted... Stay strong and kepp us updated, again I am so thankful for the somewhat mild case I had all those years ago.....

Sooo since I last responded I have started walking with a small base 4pt. cane. I still need a lot of work on my balancing. Any suggestions on how I can improve my balancing by simple exercises?!?

 

[dylandufault]

Yeah I've heard all different stories about recovery rates by patients of GBS. Its definitely got my mind and thoughts changed. One good thing about losing so much weight and body mass I can put on proper weight and muscle.

 

[RipdnTxs]

Great to hear ur progressing.....

 

[mikeg313]

Just saw this thread and it caught my eye. Shortly after I moved from AZ a couple years ago a close friend if mine there got this. Happened all of sudden. He almost died and it hit him very hard. He's just now getting back on his bike after almost 11/2 years of recovery. I had never heard of anyone else having it before seeing this thread. Extremely scary stuff. Great you survived and recovering well. Take care.

 

[dylandufault]

Yeah I've heard of stories where people never even got some strength or movement even back. But I'm thankful as hell to see a huge improvement. Before I got sick I was never eager to do leg workouts. Now I can't wait to do leg press or leg extensions. Anything to see that strength increase.

 

[KimChee]

Wow long recovery time, but it looks like you are doing well. I've only just read this thread recently, I have worked with 2 GBS patients but whose recover time was 2 weeks and 4 weeks. Did you receive plasmapheresis treatments?

 

[dylandufault]

Yeah I received plasmapheresis for 4 days and ivig for 5 days