Guillain-Barre Syndrome

[frank bullitt]

Without a doubt I was correctly diagnosed with GBS about 6 weeks ago. My Neurologist tells me they caught it early, and I was in the hospital for about 6 days. Treatment was the IVIG. It seemed to work.
Here is my question for anyone. It has only been 6 weeks or so, but my fingers still tingle alot. My feet tingle, and feel like I am walking in 3 feet of mud. My feet just feel so heavy. I have to pass a physical fitness test for my work, and I am afraid I will not be able to run again. I am on a light duty assignment right now, but am terrified my feet will not get better. Has anyone had the same symptoms??? Any response would be greatly appreciated.

[horselover]

Sounds like our GBS is running on the same track. Thankfully mine was also caught early. I had IVIg as well I was amazed how much better I felt after the first treatment. I was in the hospital for 7 days then in a rehab facility for 7 days learning to walk again. I take robaxin for my muscle spasms, which have pretty much disappeared and I am on 300mg of neurontin 3 times a day for the tingling, numbness, heaviness etc. It seems to help quite a bit. I was told to try to taper off to 2 times a day 2 weeks after I left rehab. Within 4 days of reducing the dose my feet felt numb and heavy again. I have increased back up to 3 times a day and hope that helps. My biggest worry is a reoccurance! I was told at rehab that there have been cases of reoccurance in people who try to push themselves too hard. Problem is I don't know what is "too hard". I've been out of work for 6 weeks and have my dr's permission to go back for two hours a day next week. Then hopefully 4 hrs the following week, etc. I just don't know if that is pushing too hard. I'm very driven and want to get back to a normal life as soon as possible but I don't want to set this thing off again. Once was enough!! I'm sure you'll be back to running soon. I have PT twice a week and am getting steady and strong enough to jog a few steps. I want to get back to horseback riding, I think that will take a bit longer than me jogging again.

[frank bullitt]

I am with you. I never was in rehab, but have tried to do some exercising on my own. I recently purchased an eliptical machine, to try to help. I am doing better every day. I totally agree with you.
How do you know how much is too much! I like you don't want this again. I am just going to take it easy. If I get tired or whatever, I just tell my wife. "I'm done". The tingling has subsided quit a bit for know. My fingers are really better. My feet though seem to be taking their own sweet time. I will just take it one day at a time. I hope you get a full recovery. If anything comes up, please keep in touch. Good Luck!

Frank Bullitt

[Bri]

Hi,
I also have GBS and suffer with you but if you have the ability to run
then run. If not for yourself do it for those of us that can't.

[frank bullitt]

Bri,
I hope you get better. Hang in there. I have been told that GBS is not the best disease for people without patience. I would be one of those people. Don't give up just yet. Take care!

[Bri]

I have to admit that it's nice to know that I'm not alone. My family tries to
understand but it's hard for them, especially on the days that I hurt so bad.
My doctor offered me pain pills but I declined because I seen first hand as a
child how easily a person could become dependent on them and swore that
I would never go down that road. Does cold weather affect you too? I live
in Wis. and it seems like the colder it is the more I hurt.
Bri

[frank bullitt]

Bri,
Yes, the cold does seem to have some bearing on my tingling. I don't like cold weather to begin with.
I understand about you declining the pain pills. My doctor just gave me some Neuroton, It is not a narcotic, but it does seem to help with the deadness or numbness in my feet. Lately when I first get up in the morning, my feet are so tender, I can't hardly walk. Once I get cleaned up and shoes on, it subsides some. I hope the Neuroton works. Bri I understand more than anyone. It is hard to fight, but don't give up. My wife tells me it could always be worse! Hang in there, and write whenever you want.

Frank

[chazla]

I am 36 years old and was diagnosed with GBS at the end of August 07 - I was barely able to walk by the time I saw the neurologist. No treatment was given to me and I was not admitted to the hospital since the neurologist felt that I had already hit my low point. I started physical therapy about 2 weeks after being diagnosed with GBS. I fell many times since the strength in my legs had pretty much vanished.

Regarding the tingling feeling and strength issues most likely both will improve. The tingling in my hands is pretty much gone and my feet bother me sometimes. However, most of the numbness has subsided in my feet. I had to work from home for about a month due to GBS. I was using a cane for about two months after being diagnosed. The hardest part was getting up the 3 stairs in my driveway....yes 3 stairs was an issue. In my case starting physical therapy right away helped my strength return. I am working out now about 6 times a week - 3 x of cardio (40 minutes or longer) and 3 x of strength (including working out legs). My upper body strength is almost 100% and my legs are about 70% now. I still get muscle spasms but just look at it that my nerves are reacting and repairing. The only medication I took was advil for the first month.

Keep your spirits up and make sure you are doing physical therapy including doing the exercises at home. Your strength will return and don't give up. just be patient. if you can only do 10 minutes of exercise then just do the 10 minutes and try to do 15 minutes next time.

[frank bullitt]

Chazla,
It is great to hear someone else has recovered from the same ordeal. Sounds like you are well on your way to a full recovery. I too am 36, but since this little stint, I feel about 86 years old. I just went to my neurologist the other day to talk to him about all of the this tingling. He assures me this is normal, and that the nerves only regenerate about 1 mm per day. He too tells me to be patient. Very hard for me. I have a couple of questions if you don't mind. Did your feet feel "dead", mine feel as if they are just dead weight. It is funny they did not feel that way when I first returned home from the hospital. None of my doctors even discussed physical therapy. I have started my own routine. I use an eliptical for about 20 minutes 6 x a week right now. My legs are somewhat stronger, but a long way from normal. What type of leg strengthing exercises are you doing?? I am eager to get my leg strength back. Man it sure is funny how people (including me) take things like their legs for granted.
Well regardless, I am pleased to hear you are doing well and thanks for writing. Keep progressing.
and take care,
Frank

[chazla]

Frank,

Hope you are doing well and you seem to be getting your strength back.

Very interesting that the neurologist did not tell you to start physical therapy. Even the information I found on the internet mentioned starting physical therapy as soon as physically possible.

To answer your question my feet did feel dead/mostly numb for a while. I would walk into furniture items and really not feel a thing. The first visit to physical therapy was very interesting as the therapists were trying to figure out the extent of my nerve damage. I am guessing I had about 20% feeling left in my feet at that time and the numbness was half way up my legs. It felt very weird wearing shoes and socks and I had to sleep on top of the covers at night. Covering my feet was painful/irriatating. I still have some residual numbness or weird feelings in my feet. It seems the cold and humidity causes this. The numbness is very minor though and I feel that the weird feeling is due to the nerves coming back on line.

Right now I still do the exercises that I learned at physical therapy a couple of times a week. Mostly balance exercises like standing on one leg, doing standing squats, standing with feets aligned from heel to toe, sitting on the kitchen counter and doing circles with my feet clockwise and counter clockwise. When doing the balance exercises I would use a chair if need be for support. Either in front of me or by my side. At the gym I started doing strength exercises for quads, hamstrings, calfs, abductors and glutes. I have recently added in leg presses as my strength has increased. i haven't started lunges yet but plan to soon. My upper body exercises are back to normal as my strength didn't decrease as much as my legs. I really concentrated on my legs at physical therapy.

You should try to see a physical therapist. That way you will learn the proper movements again - the way you walk, get up from sitting etc. The therapist should give you all the basic exercises to help increase your balance on your first visit.

I hope this helps and I strongly encourage you to see a physical therapist.

Best wishes

Charles