GBS and motor skills

Hi Greg,

GBS definitely can hit one side harder than another … in fact, just from my experiences, I believe that the majority of people do not have “equal” damage / recovery timeframes on right vs. left. Just from the stories and experiences that others have shared, I believe it is fairly common to have unbalanced symptoms and recovery. Personally, my right leg is still extremely weak, yet my left leg has full functionality even if not 100% of previous strength.

Best regards,
doug

I agree with Swimmy, my experience was that my left side definitely recovered slower, PT said it was because I was right dominant and used it more. But the right side of my face took 3 years to get any movement and it was still healing and getting stronger 15 years later, so go figure. Good luck and warm thougts for your recovery.

I definately had more damage to my right side – all the way from the nose to the toes (especially to places I had damaged previously in sports accidents). I am pretty ambidextrous so I have been able to switch sides as needed but I have to concentrate on working to strengthen my right side.

See! With this disease, no rhyme or reason. Just take the time to heal.

hi greg & welcome,

your doc is reading what the text books say. what others have said is reality. rest as much as you can. gbs stands for Get Better Slowly. take care. be well.

gene gbs 8-99
in numbers there is strength

My doctor was originally concerned too because GBS had effected my left side much more than my right, I had mri’s done and nothing else was wrong. Just GBS was effecting one side more than another.

In another note I got GBS late july/early august too. I spent about 2 weeks in the hospital and mine was only considered a mild case too. I am walking now, with pain but I have been able to walk with no cane and no support for about a week now. So maybe your case will be like mine and will get better soon. I still have pains in my feet and legs, but the pain is managable but it doesnt keep me from doing the things I enjoy.

Hello Greg,

Welcome to our forum. I’ll echo what others have said about textbook vs real world descriptions of how GBS effects us.

My case was not symetrical either. My right hand and arm are worse than my left. My left leg is worse than my right.

I am a a right-handed architect, and I still have fine muscle control problems in my right hand. This has continued to improve (I’m 2.75 yrs post GBS), so I’m hoping it will eventually be back to normal.

I really wish the textbook writers would educate themselves more about the disease. Because the textbooks describe GBS as symetrical (among other things), my diagnosis was delayed. Also, according to my first neurologist, GBS doesn’t present with pain. Well, mine sure did – the worst I’ve ever experienced!

Best wishes for your continued recovery,

Suzanne

Hello,

I contracted GBS in late Jan. Mine was not diagnosed until mid-april. I had a mild case also. I did not end up in the hospital because what confused them was how it affected my right side. (plus i could still walk). I went into recovery in mid-june and it finally brought my stamina back and took the pain away..even though it took about 6 weeks. The one thing the doctors said was that my overall strength and working out that i did before helped me withstand the gbs and help me recover quicker. By the way I turned 50 in the middle of this. It just takes time and it is slow…hope that helps.

Rex

Hi greg

I grew up in Melbourne, have been in queensland for nearly 10 years. I got GBS in July. Unlike you, mine was a severe case requiring ventilation. I was in ICU for 4 weeks and spent 7 weeks in hospital altogether, although I have been lucky and had a pretty quick recovery and require no ongoing physio. I was paralysed on both sides however my right definitely recovered quicker (i am also right handed) I had Miller Fisher variant which affected my facial nerves and funnily enough the left side of my face recovered a lot quicker. So i would say that recovery does vary on different sides of the body. I think why they say it is symmetrical is generally both sides of the body are affected unlike a stoke where only one side is normally affected.

When i was being discharged from hospital the OT did a test of fine motor skills. I had to put pegs in a puzzle and actually scored in the 95th pertcentile so I would say there is a good chance of complete recovery, it is just a matter of time.

If you want to chat to a fellow Aussie sufferer, feel free to pm me or email me at [email]andrew_yolande@yahoo.com.au[/email]

Yolande

My right side was affected more than my left. My right leg hurt and was so weak. I had a limp for several weeks after onset. My right arm was also very weak. But, I also noticed that it seemed to “switch”. One day my right side would be worse than the left, the next it seemed my left side was worse. I know I had more pain in my left leg and foot, but more pain in my right arm. If i overdo things, the pain is awful on both sides now, but the right leg and foot are definitely worse than the left with weakness.

I honestly thought this was wierd until I read the stories here. The textbook stuff is supposed to be used as guidelines only. Doctors forget that.

[COLOR=”Purple”]”Parry, 1993, emphasises that all criteria are simply guidelines which a neurologist can use as a base to diagnose Guillain-Barré Syndrome, rather than a definitive standard.”[/COLOR]

this is from this website…Im sure a lot of you ahve seen it, but it is interesting nonetheless…
[url]http://podiatry.curtin.edu.au/encyclopedia/guillain/guillain_barre_syndrome.html[/url]

Fairly Odd Mom
Lori, Thank you so much…. I went to the link you posted and finally got the answer I have been searching for for over 10 years. It was 10 years ago that I discovered that IVIG and PPS were being used as a treatment for GBS. Wanted to know when it was first introduced and and cited in journal material as treatment. That was in 1978 according to your link study. ( As I write this, I am very angry and crying…) I had GBS in Dec. 1979, at 18 (bad case) and my neuro at the time used prednisone in very high dosage as my treatment and told me and my family that this was the only treatment and went on to put me in an iron lung when my breathing failed. I thought my mother had been instrumental in the iron lung thing, but recently found out that it was recommended by Doc as treatment and gave her the excuse that then I wouldn’t have a trach scar. She agreed based not on the scar part, but treatment part. (okay,I’m getting madder by the minute.)The iron lung was rented from another hospital where it had been in storage for many years ( since the 50’s and the polio outbreak) and the leather strap that holds the head opening open ( as it would snap shut like a clam shell on your neck, if not for this very strap) was completely dry rotted and missing the grommets that support the latch. I sat and stared at this failing strap as it was right there 3 inches from my face, for 6 weeks, as it frayed more and scared me more. ( Now I no longer wonder why I get panic attacks and am very claustrophophic) With no way to communicate that it was going to snap other than grunts on the exhale (could not articulate, paralyzed mouth and face and probably vocal cords), I did not sleep for other than moments here or there for the 6 weeks.
After I was recovered and Doc was asking about it, I told him that it falling apart. They put it back in storage.

Now I find that I could have had PPS or IVIG and no iron lung, but a trach and maybe been spared some of the horror that has haunted me for 26 years. I am so mad, and so upset. I want to throw myself on the ground in a temper tantrum. Why didn’t he do his research, no prednisone, they knew I didn’t work by then. I have had persistent health problems related to high dosage long term pred use. TOOK IT FOR 8 YEARS!! at 60-100mg per day. Lost my thyroid, gained astronomical amounts of weight, hypoglycemic, bad lipid panels. God, iIwish I could remember all of it, but most of all, I had Stomach cancer in 96 and 98 and they said it could very well be related to the pred use all those years. As it was precipitated by ongoing ulcers from the pred. God help me and all of us who got bad treatment and have had to put up with it for years and years and years.

I swear, by God, that I will do my bess to educate not only patients and their families but the GD doctors who are playing god with our lives, if it is the last thing I do!!!!!!!!!!!

Nat,

You attitude and resulting dedication to help others is amazing. Hope you are 110% successful … and let all of us know how we can support not only you, but all others in this ordeal we call GBS / CIDP.

doug

Natalie,

Your last post grabbed me by the throat. I’m so sorry you went through such an ordeal, and continue to suffer because of the ignorance of others.

Educating others about this is a great way to make sure the bad things that happened to you don’t happen to other patients.

Best wishes for good health.

Suzanne

Swimmy, how’s about you, me, Lori and Suzanne go to the Tavern for a Drink, I think I need one…..

Sounds like a plan. Unfortunately, I had to work late last night. But, lets cut off by 4 this afternoon (the boss is on vacation, so no worries) and I will meet you all at the tavern. By the time you arrive, I will have a tab set up for all. 😎

When they say equally they mean generally equally. Meaning that usually when you get numb you get numb on both sides its not exactly the same. When laying in the hospital bed I felt like both sides were equally affected (numbness, weakness etc) and still do today. However, in the hospital and now at rehab they do strength tests and can see more strengh in one side than the other. My GBS onset was in early July of this year and I have found that my right hand coordination is better now than my left hand coordination. Part of it is a matter or working them to get the coordination back and part of it is a matter of waiting and seeing what is going to repair. Right handed people use their right hand more often in day to day things.

One thing I have found that has helped me is doing puzzles. Make sure to equally use both hands for picking up pieces, turning them, putting them in, etc. It is very frustrating to do this left handed, let alone with a left hand that doesnt want to cooperate fully but this is the type of fine moter skills that need to be worked on to help with improvement. If you do these types of things then you are doing all that you can and anything else is just a waiting game for the nerves to repair. But working fine motor skills will help with recovery.

Interesting application of puzzles. Makes sense.

When I broke my neck and had nerve damage, the doctors actually suggested I practice manual dexterity by taking a deck of cards in one hand, and trying to take one card off the top of the deck and place it on the bottom of the deck in the correct orientation, using only one hand. After going through the deck with left hand, do it with the right hand.

Sounds like just another version of the puzzle exercise.

Good luck.

[QUOTE=gksam63]Hi all,

I am new to this site and am recovering from gbs which i contracted in early August 06. I was very luck as i only have a mild case but even that has stopped me in my tracks. My question is my strength has returned on both sides of my body but on my left side my leg, hand and arm are only at about 60% where my right side is around 90 to 95%. today i went to the hospital for a check up and the doctors where concerned about my left side as they are saying that gbs normally effects both side equally. so they are going to do a mri scan on my brain to see if something else is going on. i have been playing guitar for 25 years but at present cannot move my fingers quickly enough to change chords or play single note lead parts. so my question is can gbs effect fine motor skills on one side of your body more then the other side.

If anybody could give me some info on this it would be very much appreciated.

Thanks

Greg from Melbourne Australia[/QUOTE]greg:

Sure is funny to chat with a person from downunder. I also played guitar and think I have lost that skill forever. I do not have any hand strength to make a cord or make my ring finger move where I know it should be. I was dx’s on April 21 2006 and wonder when I will be able to walk better. My legs are really weak and feet ache and burn a lot. I take 3000 mgs of neurontin to help with the pain and ambien at night to help with sleep. This is a tough disease to get over. I just had my 70th birthday, so I really didn’t need this. I had never spent a night in the hosp before so I really have no reason to complain I guess. Wish you well in recovery and let the forum know how you are doing from time to time. I enjoy reading about others who are hurting also. Osborn ellijay Ga.

hi greg, don’t cut your losses yet! you might be able to play the guitar again someday. it may take alittle while but like we say in this disease-getting better slowly is the name of the game.
osborn-You also- you might be playin before you know it. never give up-never give in. keep that guitar close by!

to answer the question if gbs affects both sides equally–yes it comes on equally, but may and often does leave asymetricly. with me it comes on most of the time symetricly and leaves starting with the leftside arm, rightside arm the leftside leg and rightside leg. i am right handed, and now i’m lefthanded for most things, my righthand and arm is not recovering as well as my lefthand side is. the same with my legs, i actually have muscle atrophy in the right arm and the right leg. no its not like that normally, but then again i am always told i’m unique!:)

I was also hit with GBS in Aug 06, (also mildly) and I had a worse effect on my right side (strong side) than my left side – go figure. Most of the doctors are trying their best to understand but as you are probably seeing through this forum, there is no set guidelines to GBS. Keep the faith, I have decided to take it monthly because trying to explain the little bits of progress to my friends and relatives is impossible.