What are your residuals?

Roxie, thanks for you note on my thread. My residuals are paresthesias(tingling in hand and feet). The face paresthesias are gone. My arms/legs are weak with repetitive movement. My right foot drags when I overdo. All symptoms worse in pm. Dr. Shawn

Hi Roxie,
I am a little over 3 years post GBS and still have many residuals
[B]Fingers & hands[/B] – numb with tight burning type tingling and pain in hands and wrist
[B]Arms & shoulders[/B] – numb and tight, feels very heavy and pulling down type pain – left arm very painful most of the time
[B]Neck[/B] – feels tight around throat
[B]Chest & stomach [/B]– feels tight all the time very tight after any activity such as driving
[B]Back[/B] – tight between shoulders and lower back. Pain in lower back after any type of activity
[B]Hips[/B] – very tight with pulling down type pain also feel heavy
[B]Legs[/B] – lower legs feel numb and tight with pain
Knees – lock when walking most of the time, constant pain
[B]Feet & toes[/B] – bottoms of feet and toes feel numb and tingling all the time but are very sensitive… Feet feel swollen after activity
I still manage to get around, it’s just very uncomfortable most of the time. I still drive and use a walker most places I go. I also still keep my hope that this will all go away some day. Take care and good health…..John

Hi Roxie:
I am 15 months in and still have a lot of residuals effects. I have made a lot of progress, but still walk funny and it bothers me most when I am in a store or on pavement. If I walk slowly, I can do okay but tire our really fast. My worse is my tremble in the hands and fingers. At times if I have exercised or done some work, it is so bad I can’t type. No control over the little fingers on both hands.
The lyrica works for me with the foot pain, if I stay ahead of the cruve. I take 100mg in the morning,150 at noon and 100 at night. It kind of numbs me out and makes me sleepy, but my feet do not hurt so bad. My worse pain is in my left foot and ankle. My worse residual is the fatigue factor. I need to lay down in the afternoon for an hour every day or I will suffer more. I also try to budget my energy and do activity in the mornings. I am blessed to be retired and do not have to work a job as many others do, so I really feel sorry for them knowing the problems we have to deal with. I hope this helps someone and thanks for your question.

Im glad to read this, I thought I was out of my mind last night, I started crying becouse I my thought was I never going to be the same again, now almost 9 months birthday of GBS I still walk on balloons, my feet are numb and tight, still gett numb up to hips when Im tierd, and I have to do my things in the morning the afternoon is out of power most of the time. I got tingles in my hands and get numb when I get tiierd up to my shoulder, I shake when im tierd both hands and feet. And hear me here Im complaining and Im just a junior in this all, I have lot and lot of months to recover and it is going to come someday, I think 🙂 Well I should not let this state of mind get to me, I have been hopful but this was one of these days, needed to get to the store and I did, but I found out I could not carrie as much as I wanted so I bought only what I desprite needed, well that is also a good thing I have more money in the buget *LOL*
sorry guy´s about this rambling just needed to relive of my heart.
xoxoxoxoxoxooxoxxooxoxo
Helga
ps I love you guy´s you are my family when it comes to GBS, nobody realy understand us and how we feel though our family and friends try

Hi Roxie: I am 26 months out and deal with chronic pain in my legs-all parts,-fatigue-must sleep during the day no matter what-muscle weakness leading to problems with knees and hips, and my leg strength is less than 50% of what it used to be. My feet burn and get numb and, as I have written elsewhere, am needing a wheelchair most of the time again. I have carpel tunnel in both hands. Other than that, I am fine. Jeff

Roxie,
I think you need to find out when each person who replies got GBS. Otherwise the residuals won’t be able to be compared. I would like to know how many people have one foot worse than the other and if it is the dominant foot. My right foot is worse and it is my dominant foot.

GBS Spring 1986
GBS Oct 2006

I am approaching my one-year anniversary from GBS. I still have burning on the bottom of my feet, my toes and fingers go numb, I have mild buzzing sensations in my arms and legs when I get tired — and I get tired more easily! My legs occasionally get that “freezy” feeling, but the warm weather has REALLY helped that.

22 years post.

Severe fatigue
weakness in limbs at times
fasiculations under my feet after wearing shoes too long
Pain and burning in hands and feet (legs and arms at times too)
Loss of balance, tripping easily
tingling and numbness (not all the time)
drooping left eye when tired – slurring speech when tired
Depression

9 years Post

I get like numbness in hands, feet, and sometimes face.
It comes like a electric curt almost and then it is gone.
My foot went totally numb, back in March I thought I was
starting all over again.
With stress I notice loss of balance, and fatigue if I do alot.
I have been under a lot of stress at work…and notice all my
signs when I first got GBS coming back. I got real consinder and
got on the website here and found out about the Residuals.
As the stress level goes away at work…the Residuals are less.

parker0507/jb

Carolyn
My entire left side is worse than my right and is not my dominant side.
John
GBS 3/13/04

I also have numbness in my dominate foot (right) it has improved 70% in 7 months my left foot is 99% normal (Steve)

I am 20 months out.

I have numbness in both feet (left greater than right/right dominant) that increases when I am tired. I still fatigue easily and require more sleep than since I was a tiny child. Fatigue also makes me walk funny, although I don’t think I have true foot drop–maybe just foot drag. 🙂

Bruno179,
Can you explain what you mean when you say you feel “tight?” My 3-year -old is recovering from GBS and says her feet and hands get “tight” and I stretch them because that’s the best I can understand tightness. Can you help me understand that sensation so I can help her??
thanks so much,
Laine

Hi Roxie and All,
My symptoms are similar:
tingling and numbness on all my extremities legs, feet, toes, arms, and fingers slowly moving up to my thighs and shoulders when I’m tired. Fatigue factor kicks in quickly so I need to rest often. I can walk unaided fairly strong about 40 feet then my legs completely give out. Night time and humidity and cold are worse for me. I sometimes get shooting pains in my legs at night. I try to stay positive but it’s hard…:o

Joyce

GBS 9/2002
CIDP (relapse with Flu) 2/2005

My residuals seem to only give me a hard time after a long day or if I have been out in the heat too long (or had a stressful day).

Head and face: still get tingling around the right lower side of my face. My mouth and lips still tingle.

Neck: it gets numb and tight. My throat is involved too.

Arms and hands: some muscle weakness and my left hand tingles esp. a U shape area on my palm and wrist (from my pointer finger tip to my pinky finger tip).

Legs and feet: I will get tingly up to my bottom, pain in my feet. My left seems worse than my right, but then again it was the first part of my body that was affected. The pain is tolerable these days. Muscle twitches!

And of course muscle fatigue and worry and depression. I also experience lightheadedness but finally my memory is improving well. I have been doing very well stamina wise and no longer require daily naps to function.

I take Mannatech, CoQ10, multivitamins, alpha lipoic (dont take at night cuz it will keep ya up), extra vitamin C, and drink lots of Vitamin Water (which has B vitamins and electrolytes in it). I am only on an anti depressant but nothing for the residuals. I still have to convince myself to rest more often even if I dont feel I need it. But it is so exciting to be able to go up and down our stairs when just 12 months ago I could not do that, heck it is exciting being able to do everything I do for the same reason.

I still have problems going to the bathroom sometimes. Other times everything is fine.

[QUOTE=hillsmom]Bruno179,
Can you explain what you mean when you say you feel “tight?” My 3-year -old is recovering from GBS and says her feet and hands get “tight” and I stretch them because that’s the best I can understand tightness. Can you help me understand that sensation so I can help her??
thanks so much,
Laine[/QUOTE]

The skin feels as if it is stretched too tightly on our body. Another good way to explain it is, have you ever experienced swelling where your skin felt tight? well that is about how the tightness feels. Or you can compare the feeling to wearing a pair of long socks or pantyhose or gloves that are too small. I had it bad and kept feeling as if I needed to stretch. Stretching helped but the sensation didnt go away. For me, it was worse in my right lower leg and made walking interesting. Fortunately it is only an occassional residual now.

prayers for you and your angel

Hillsmom.
I get that feeling of tightness all the time and it’s infuriating! It’s like being bloated with three pairs of socks on that are too small but you still can’t feel anything, and your body is screaming inside “I hate this feeling!” Stretching helps, it feels good (kinda hurts but feels good). I’ve had these residuals for 4 years now.:( Hope your little one gets better it’s hard to understand.

Joyce

Thanks for explaining the tightness. None of the docs or therapists knew what she was talking about. If stretching doesn’t help, what does???

Laine

it unfortunately just has to get better on its own, Hillsmom. But stretching will help ease the feeling for her. You can even teach her to do it that was she is involved and doesnt feel as helpless maybe. It’s as if our body NEEDS to stretch, I guess its a natural reaction to the tightness. Mine was always worse first thing in the morning, but eased as the day went on, then got icky again at bedtime. Keep her cool, not too warm cuz the heat really makes residuals awful and uncomfortable.

Hillsmom,
Looks like you got some good help before I could get back with you. All the info given to you is the same and more that I could have given. Thanks everyone for explaining it probably better then I could have. Now other than stretching is there anything that will help. Neither Neurontin or Lyrica seem to help.Take care and good health – John

20 years post:

Tingling in hands and feet with cold, fatigue or stress. Can get extremely severe especially with cold. (By cold I mean even air-conditioned places especially grocery stores)

Numb spots in a few areas.

Chronic fatigue. Extreme fatigue when I make a mistake by overdoing it.

Hypochondria….. 😮

1 year post….

I read above that one person is adversely affected by cold. How many have that problem? My huge trigger is heat and i have read several of us are that way. But the cold one is interesting. Sheesh already I am looking forward to the Idaho winter after suffering thru this odd heatwave of record temps. Did I bring them with me from CA?? LOL instead of a big grey raincloud following me, I have heat and sun 🙂

I actually had a severe case of CIDP over 5 years ago in 2002; but it was so bad I was dx with GBS for the first 6 weeks. But since it was arrested by chemo in 2003 & I have not had any treatments since then I feel more like a person who had GBS then CIDP.
Residuals: numbness in lower legs, feet especially numb. No movement in my ankles or my feet, thus total foot drop which means I must wear AFOs all the time. I also have no balance so I need a cane to walk. No more running, bending down, limited walking just as I need to function. Weakness of my hips & knees as well.
Fatigue: I must sleep at least 10 hours a night & usually must take a nap as well during the late afternoon to feel halfway normal.
Hands: my hands recovered about 75%, but I still have numbness on the palm side & theya are weak overall.
Heat: I don’t handle heat well, & have to be careful not to get overheated, as it zaps my strength.
Muscle twitching: particularly at night, when I am trying to rest.

But I must say that I am happy to be where I am now, as my neuro never believed I would walk again, nor did he think I would get any use of my hands back. I was so bad for 2 1/2 years that I am content to be able to do what I do, & live a pretty full & normal life.

I actually had a severe case of CIDP over 5 years ago in 2002; but it was so bad I was dx with GBS for the first 6 weeks. But since it was arrested by chemo in 2003 & I have not had any treatments since then I feel more like a person who had GBS then CIDP.
Residuals: numbness in lower legs, feet especially numb. No movement in my ankles or my feet, thus total foot drop which means I must wear AFOs all the time. I also have no balance so I need a cane to walk. No more running, bending down, limited walking just as I need to function. Weakness of my hips & knees as well.
Fatigue: I must sleep at least 10 hours a night & usually must take a nap as well during the late afternoon to feel halfway normal.
Hands: my hands recovered about 75%, but I still have numbness on the palm side & theyaare weak overall. Virtually no fine motor skills.
Heat: I don’t handle heat well, & have to be careful not to get overheated, as it zaps my strength. I get overheated very easily now.
Muscle twitching: particularly at night, when I am trying to rest.

But I must say that I am happy to be where I am now, as my neuro never believed I would walk again, nor did he think I would get any use of my hands back. I was so bad for 2 1/2 years that I am content to be able to do what I do, & I live a pretty full & normal life.

1 year exactly today (i feel like it is my birthday or something … where are all the pressies?:p )

Electrical “zaps” in my left hand (right hand dominant)
clumsiness – tend to trip over my own feet
fatigue / need for regular “nana naps” when i can grab them, although this has improved significantly over the past few months
irregular pupils when i am tired, one can be much bigger than the other, not sure if it is one in particular

All in all, i would say i am 99% recovered and will probably never be 100%, but considering where i was this time last year and my family not knowing if/when i would recover, i feel lucky to have such a short list of residuals.

Sylvia Your symptoms of cold bothering you is it from your GBS or could it be Raynaud’s. Also are you taking anything for the cold? Like medication so the cold doesn’t bother you?

Sue

Thanks for asking Sue. Somewhere along the line someone mentioned taking a Niacin supplement -it’s also indicated for Raynauds. The niacin really seems to be helping. I guess it could be either GBS or Raynauds, but I don’t know how much it matters which it is. I’m in the process of finding a new PCP to help me figure out what’s what. Sometimes though it really seems like you can’t get the same answer twice from docs. I read somewhere that “after 40 you’re your own best doctor or your own best fool.” Sadly I pretty much believe that rings true for these weird, non-critical symptoms many of us seem to have.

Sylvia,

When someone puts a cold hand or foot (or whatever) somewhere on your body, does it feel horribly painful? Not too sure how else to describe it, but thats what happens to me. The cold is actually pain :confused: . Strange …. but true …. 😮

Ali are you describing what I feel like when I have a fever any time I touch my skin in hurts. I know with my Raynaud’s symptoms which the Rheumy thinks might be my CIDP causing it. It’s like the veins in my hands go in a spasm and they just can’t seem to warm up.
I carry gloves with me sometimes when I got grocery shopping otherwise my hands hurts so much.
Right now both my ears have bad tinnitus. My left ear is the ear I have my normal hearing lost. But last Saturday my ears started ringing and I find I don’t hear as well. I am going to see my ear DR this coming Wednesday.
I know my hearing really got worse around the time I got my CIDP then the following year it came back to almost pre CIDP. So now I wonder why both ears are giving me troubles. I am also waiting for my first ever booking of IVIG. Never got the call yet.

Sue

Kevie gets a different tightness,. especially at night. He tries to stretch his whole bodt out right before bed. He lays flat, clenches his teeth and stretches. He also complains of heel chord tightness when he overdoes it, as well as his hamstrigs.

Occasionally his feet burn when he overdoes it, and he gets a tremor in his hands if he has been doing too much lego building or writing.

Headaches are a constant when fatigued. I read some other posts regarding spinal manipulation to aid in this problem. If there is no spine issue, how does this help? If it does, do you think it is dangerous for a ten year old?

Acid reflux also has become a problem, I am assuming it is because of pain medications.

And of course, his mental residuals that will never keave! I hate this one the most! The not knowing what and where or when something will happen is so hard to deal with, it never goes away, but Kevie is learning to deal with it. I do not know about me though!

Dawn Kevies mom 😮

My onset to Miller Fisher GBS was March 2003.

My residuals; Sensativity to light and brightness
Sensativity to loud sounds
Severe headaches
Burning, tingling, numbness is constant in the head,face, hands, legs and feet. At times there is numbness to mouth and also drooping of the mouth.

Drop foot in left leg still wearing a foot brace and walking with a cane. About a year after onset I was also diagnosed with Raynauds which also causes sensativity to cold and heat, not being able to determine temperature control in the hands and feet.

Still have a very hard time climbing stairs, walking, sitting or standing still have problems there.

I have anxiety and fear of what is going to happen next, that thought is constantly on my mind. I’m still keeping it positive, I like helping others, I’m still moving forward even if it’s at a slower pace! And I tell others as well to keep positive, strong and most of all keep laughing too!

Brandy’s residuals are fatigue (more when stressed), raynauds, vertigo, allergy to many antibiotics, migraines, panic attacks. All are minor as she made a remarkable recovery and daily we are thankful and truly blessed.
GBS 08/03/99

I had Miller Fisher/GBS in 1986. I have a lot of fatigue, get tingling in my face and all over the body. My left leg is the worse and they just drag and it is very slow walking. When I get extremely tired my hands start a jerky movement if I try to type or use them any way and my ankles and legs feel like they are pulled so tight in the back. Extremely sore for several days afterwards. I also get extremely severe headaches. I have blurred vision and sometimes it is double vision with dry eye problems. My speech gets slurred and I start falling sideways when I try to walk. Good days I make it pretty good but bad days puts me in the bed.
I have also experienced liquids oozing out the side of my mouth when I drink something. I can’t hold anything in my left hand or I will drop it and sometimes when I start to set something down I think it is over the table but when I release it, it is not and falls to the floor. I just thought of something else. If I get real tired, I get extremely cold. Don’t know the connection but maybe somebody does.

[QUOTE=Roxie]I guess you are right about putting in how many mos, yrs, etc that your doctor said you were fully recovered. SOOO….. GBS diagosed 2000- supposedly fully recovered 2002. HA! HA! I will truly try to get this to the board and as many neurologist as I can. We Have to make them understand. Thanks again! Roxie xoxoxoxo[/QUOTE]

Roxie,
make them understand what?? I am trying to understand what my daughter is and has been going through, but moreso what the future holds for her health. I hear health professionals talk about full recovery, but no one on this website (that I have seen, anyway) seems to be without residuals. I’ve also been told that recurrance is extremely rare (esp. in little kids)–but almost everyone on this sight has had recurrance! Are you guys worst case scenarios or this is the norm?? Please explain . . .
Hillsmom

Sorry to be posting so much, but the more I read the more I need to know! Dawn–what do you mean by mental residuals?

Hillsmom

Hey Hillsmom,
I can’t speak for Dawn but I think what she means is the mental state we all go thru including you as the caretaker. The highs and lows of progress and then when we get sick again having to start all over, coming to terms with the fact there are some things we may never be able to do again or at least as well. (ie: rock climbing, bowling, dancing without falling down etc…)
For many of us everything in moderation as we fatigue easily, it is not as bad as it sounds just not what I would have wished for. There are many worse off than I. It can get very depressing at times and stress aggravates and activates my system so I need to snap out of it or I am in worse shape. (Don’t know if that makes sense or not) I agree with you, it is very hard when all the medical doctors seem to say it is rare to have residual symptoms yet we do and then my doctor keeps saying “it will not get any better but let’s not let it get worse. Keep in mind you will eventually be in a wheelchair.” Doh….what!! I choose to not believe everything he says, I check to make sure his protocal is what everyone else seems to be using aand working and so far so good. I am having insurance problems but my treatments have been working and I am 5 years post GBS. I know it’s frustrating this whole da… disease is but vent and ask here and we all will try to help you. My daughter can’t even tell me when she has an ear infection and she’s 6!

Best,
Joyce:o

[QUOTE=Roxie]I would like to get a poll on everyone’s residuals and send them to the board so they can have a better idea.
I will start with fatigue, burning in strange places, blurry vision at times, off balance, drop foot, fasiculations( like pop corn under your skin), body jerks, RLS, tingling and numbness, unable to sleep, depression at times, no stamina just to name a few. Thanks for your support. Roxie xoxoxoxoxo[/QUOTE]

I itch alot in diffrent places just like the shocking sensations. Sometimes my depression seem off the chart and I’m on 3 meds for that. I’m losing my appetite except for sweets, don’t understand that but I will eat a salad plate of food and feel full , but the sweets are a diffrent story.I just have to stay away from them totally. They are putting me back on physical therapy two days a week. I lost 37 pounds in 3 weeks and have gained it all back plus some. I think thats contributing to some of the depression.
But I have everyone of those residuals except for the tightness that was mentioned. I have the drop foot that trips me and it is worse in the PM than AM. I love my hot tub , I have the heat turned down and I just float in there like a whale but there is no strain on my body.
All in all I think the depression is tougher on me than anything. It seems as I have been 3 diffrent people in the last year and I want the old Tim back but He is gone. Sorry to go on and on. I know this was just to list the residuals but I have a tough time just making lists.(think thats a residual)?
Tim:rolleyes:

Hillsmom

Your daughter may have no problems at all in time—and that time could be very short or it could be a while. I am sure there are a lot of GBSers that have little to no residuals. Here we find a kinship, other people also having problems or finding hope in more recovery even after so much time. I can only speak for myself, it has been one year now, and I am still not entirely willing to accept “this is how its going to be”, but I also know there is a chance I will experience problems the rest of my life. This is not a syndrome to be taken lightly. Doctors dont know enough about it to give you a thumbs up and all will be perfect. I know there is one who is doing a lot of research on residuals and he is quite educated…he has learned from us, the people who have gone thru it. I dont want you to ever give up hope on a full recovery, but you also must realize there may be residual problems ahead. Your daughter is young and she has that on her side, her body and nerves could very well learn to work around any problems. She could have such slight problems that she may never mention them. She may very well have no problems at all. It does get better each and every day, little by little. It does get better. Soon you will look back and you will have a hard time remembering how things were, and you will be glad she has come so far.

You asking questions is good, it helps you learn what to expect and how to prepare yourself and your daughter. BUT there are people here who dont post very often that have made full recoveries. Have faith, have hope, and dont stop learning because you can pass along your knowledge to someone else who will need it.

Hugs to you and your angel!
Lori

One thing that I haven’t seen listed but I experience now is there are times when I notice I’m hungry and then moments later I realize that I am starving and HAVE to have food NOW. It takes quite a long time to recover my energy level after that (1-2 hours). And it comes on very unpredictably, I could just be going about a normal day’s activity and whamo it hits me.

I feel that my memory and cognition has been impared since GBS. And I’m not on neurontin. I notice it in my typing also, sometimes words show up that weren’t close to what I was thinking, just random stuff. I am dyslexic and it is much more noticable now.

I have burning pain in my feet, fatigue, twitching in my face, random stabbing pains that cause me to scream out (they surprise me and hurt quite a bit), depression and anger at times, and I go through periods where I feel very itcy like bugs crawling on me (differnt places on my body).

Dr Parry seems to be very well regarded as one of the top experts in the US. I read one of his papers on residuals and if memory serves me he stated that they are much more common than current medical literature acknowledges so I’m not so sure we aren’t in the norm. Maybe residuals are part of “full recovery”, I don’t know.

I am only a little past one year out from GBS onset but I can tell you that I’m maybe 50% of what I was before GBS. Of couse 5-6 months out I thought I was 85-90% recovered–I think it was more of my tenacious nature not being willing to accept the limitations/damage of this illness. I was stronger but I think I willed it mentally and have rebounded some since then. Seems that I am much more tired physically and mentally these days. And the symptoms show up more when I’m under stress from work or other sources. Also I notice a cycle in the fatigue, I’m good for about two months and then I start a crash that ususally lasts about one month. I don’t notice it right away so that doesn’t help. I start to realize what’s happening about 1-2 weeks into the crash before it sinks in and I start backing off from my physical activity and take it easy. Another thing, I sleep and take naps much more than I use to, and I do mean much more.

Does anyone else have problems with cholesterol? I use to have great numbers and since last year it’s shot up really high. I have a very low fat, high fiber healthy diet. I am an athlete and was in great shape before I got sick. It’s a different story now but like many have said I’m much better today and will gladly take what I have and be grateful. That doesn’t mean I don’t get sad and angry about what I lost from time to time–I do.

Very interesting and very sobering to read these many responses. My residuals include on-going fatigue requiring much sleep-much more than before GBS; general leg weakness, fatigue and pain which require me to use a wheelchair now more than in the last two years since getting sick; for the same reason I cannot sit for very long and must lie down or recline much of the day; carpal tunnel like symptoms in my wrists which prevent much writing on the keyboard; burning in my feet with numbness in my left foot, and at times some depression and anger. Jeff

Hi Roxie, i have been having really painful contractions in the legs, thighs, calves, fingers sometimes in the arms as well. I also experience that rubber band feeling around the knee as well and tremors in my hands especially the right.

GBS-Onset 6/08/2005

One year out of GBS. Hands, feet, and left side of my face stay numb all the time. On days I have to go out I can count on pain in legs and arms fallowed by blurred vision and slurred speach. I can no longer drive more than 20 miles at a time because my arms and hands go to sleep. I have been on antidepressents since I left rehab.

33 years post – Spring 1974.

Chronic fatigue that continues to get worst with every passing year. 🙁

It’s been 17 months since I was diagnosed with GBS, I still get some tingling in my extremities…generally in the evenings after I’ve worked out. I don’t view it as residual as much as I do healing…I’ve worked my butt off since June ’06 & have gotten progressively (albeit slowly) better. I was a quadriplegic for the 1st 5 months, now I’m walking a mile without a cane & swimming a mile twice a week, most of the pain & fatigue subsided as my body became stronger & more conditioned through exercise – it’s been hard as hell, but I intend to win this battle, I “can’t quit until it’s won.”

Almost there…

Hello all,
4 years ago, I was on a vent for approx. 1 month, spent another month in rehab. and released with a walker.
I did become able to walk again unaided, but tired easily.
Today I walk with a cane, have some tingling in my feet still. Fatigue is a problem, also “numb skin” on my thighs there is sensation, but kind of muted…
Otherwise, I’m doing ok, but my neuro thinks this is as good as it will get.

Ali, I can’t really describe it as pain… but I have a numb area above my knee where I simply can’t tolerate the lightest touch. It doesn’t sound like an area that would be bothersome, but it’s where hands go for comfort, for signs of affection when your sitting with hubby or something, and when kids come to be in your lap. It litterally just sends me through the roof. It’s just unbearably irritating, like fingernails on chalkboard nutz. Can’t think of how else to describe it…:confused:

well, let’s see –

I work full time, although it’s hard. I get muscle soreness in my forearms every day from the continuous typing, my fingertips get sensitive, and hurt with every keystroke. I also have (i think) acid reflux from being on naprosyn for pain for over a year, having a gastroscopy in 2 weeks. also, this is probably the chest pain I get. I also get shaky feeling in my left leg, mostly, and in my arms if I overdo things. also, I get shaky when exercising certain muscles, even if its just holding my leg out straight, and flexing and extending my foot back and forth. I get shaky in the calf muscles. does anyone else get that? I also get a funny feeling behind my left eye . pretty much, my left side is weaker than right. It has been like that pretty much my whole life , and gbs has worsened this difference.

GBS and MFS March 2006

Still have double vision strongly in my peripherial vision that I notice although the neuro-opthomologist says it is still in my forward vision too, but my brain has compensated and it is slight. I can tell my eye sight is not what it used to be – but it has been stable since April 06.

[LIST]
[*]Stress causes all of my symptoms to flair and be noticed. My left side is far worse than right.
[*]Left eyelid droops always, worse when tired
[*]fingers on left hand tingle, especially pinky and thumb
[*]left foot is mostly numb and tingly
[*]when really tired I feel it in my lips and left side of face (numbness and tingle)
[*]balance is still off and I tend to stumble on my own feet more than before GBS
[*]Fatigue to the point of exhaustion. While this seems to come and go- when it comes it is bad. This week was one of those weeks.
[*]While I regained a couple reflexes in both elbows, I am still missing all reflexes in knees and ankles on both legs.
[*]Shoulders, neck, arms and legs get tired easier than before. I’m still very active, but I do try to not over do it. I won’t let this STOP ME!
[*]I also will get the odd sharp pain
Oh – i forgot the burning sensation in my feet when I exercise – walk or ride bike – it is like they are on FIRE!
[/LIST]

I’ve been reading these forums for a while now, and decided to post on this one. Thank God for these forums! I thought I was losing my mind! I also am having a tough time with residuals. Fatigue is a constant battle. I seem to have 3-4 day cycles where I feel OK, then I crash. Usually because I’ve done to much. I’m still learning to pace myself. This has been very difficult for me. My right side is worse than my left. I have a dull ache in my right leg that results in my foot dragging at the end of the day, and a lot of tripping and running into things. I feel as though my depth perception is “off”. I must sleep 10-12 hours or it feels like someone beat me with a stick! I have problems getting to sleep though, due to the constant aches in my right leg. I am making progress, though it is painfully slow.

GBS – April 2007\
10 years Post

My residuals are directly related to my level of stress, tiredness, and over exertion. I have days when nothing works right – I drop everything, stumble, can’t get my fingers to work right, will stop writing in the middle of a word because my hands quit working, etc. I have days when I can pretty much not even think about GBS and it’s residuals because I have deemed so many things as “normal” for me after GBS. But then have have the other days when it is “in my face” with it’s ugly residuals constantly.

I work a full time job and stress plays a big role in how I feel. Most days it is all I can do to get through the day and come home and do a few of the things I would normally do after getting home. Thank goodness my kids are grown and it is just me and hubby – I can’t imagine the extra work involved with raising a family with GBS.

A weird residual I get is, my tongue goes numb. When this residual happens I know it is time to do some serious resting, it’s not something I can just ignore and keep going (which I still try and do). Fatigue is a BIG issue for me. I think I have forgotten how it feels to be rested.

I get the regulars also, my hands, arms, legs, feet get numb; my legs and arms sometimes feel like they have lead in them; balance is shaky; can’t walk if I can’t see my feet at night, change in barometric pressure affects me, eyes won’t focus, fatigue, fatigue, fatigue, and more fatigue.

Since it has been over 10 years, I figure it’s pretty much with me for good. I have a good attitude and I think that helps a lot. I count my blessings every day and I have lots.

What a great thread! Thank you for starting it. I was amazed at the number of residuals that I identify with (12.5 yrs. post GBS). FATIGUE, always, always. I find that I have “spots” of muscle atrophy inspite of exercise/yoga. I assume that the nerves aren’t communicating with the muscle. And I very much dislike the muscle spasms that happen just under my right rib cage. It takes my breath away and sometimes lasts so long that I become frightened ~ it hurts so much! DeborahF posted most of my residuals

I think that it would be a great idea if the Foundation would organize these residuals into a form that would be [I]permanetly posted [/I]with the forums (one wouldn’t have to search thru a bunch of threads to find just one or two). That way, anyone, old or new could read up on what we have experienced and know that they are not “crazy” or that it’s not “all in their head”. As bad as these residuals can be, [I]there is comfort in knowing that someone else has also experienced it. [/I] If someone comes up with something not on “the list”, then they could contact the Foundation to have it added. It’s just a thought. . .

20 months post GBS…residuals include:

[B]Fatigue[/B] to point of total exhaustion — comes and goes but seems to be directly related to stress levels (you might say duh…but I [U]really[/U] noticed it this year after moving 3 times in 10 months and being sick for 6 months of that timeframe). Some days I also notice a strange feeling behind my right eye. (Right side somewhat more dominant but GBS definately affect my right side more than my left)
[B]Burning hands and feet[/B] — especially after walking or standing for a long time
[B]Pain from holding/touching anything cold[/B] — hurts a lot
[B]Numbness or pain/tingling/pins & needles[/B] — definately noticed this after fighting an infection for several months that I just could not get rid of. When it was at its worst (while I had vertigo from the infection) the tingling actually progressed up my arms to my shoulders and up my legs to my knees, numbness increased in feet and hands, also increased problems swallowing and tingling in the right side of my face / nose / ear / neck and tight band around chest. This caused the unpleasant effects of depression and fear
[B]Tightness [/B]– hands and feet especially in early am and late pm. I find myself now unconsiously stretching them throughout the day. Also tightness in shoulders and legs
[B]Redness and severe tingling/pins[/B] in palms of hands & bottom of feet during thunderstorms – weird but true
[B]difficulty sleeping[/B] – twitchy and feels like needles or knives randomly poking me all over at night when I first try to go to sleep

This being said…most days I feel pretty much normal for about 85% of the day. I am grateful I have recovered this much.

is that wierd feeling behind your eye a pressure/pain? Almost like your eyeball is grating on your socket? Sometimes I feel every little movement of my left eye and it drives me insane!! I have also noticed that my vision has definitely changed since onset. Have to make an appt to get new glasses…note to self 🙂

Has anyone else noticed that your muscles seem less flexible now?

Hmmmm, I guess this is all helpful. I have had some tingling and burning in my hands and feet and was thinking it was the nerves regrowing or something. It is worse in the night. I am 5 months out. My left leg is weaker than my right. I can’t say all of these are residuals because I am still early in the program! I do still have significant issues walking, and with any endurance. Still need a nap, sometimes two a day. And a full night’s sleep goes a long way in making me feel better.

I think this is very helpful for everyone to write these things out because then you don’t think you are losing your mind. Gabe

Fairly Odd Mother,

The feeling in my eye is kind of like an unpleasant pressure…not really grating but sort of like a weight pressing down/in. Hard to explain…but thankfully it is not a regular / everyday kind of thing. That would really make me crazy.

Flexibility was a problem at first…I had to start stretching daily to get back my range of motion. I also noticed that damage from GBS seemed worse where I had had surgery (rt shoulder) or previous significant injuries (knees & ankles).

Interesting about the pressure/pain behind the eye. I have been complaining about this too, behind left eye off and on. Had a ct scan w/contrast, to check sinuses, and they are good. however, I do get headaches from seasonal allergies in that same area too.

It is so good to read that I am not nuts about the eye thing. I get this in my left eye when I am tired or have spent too much time in front of the computer. It hurts a bit and is so incredibly annoying that I am very glad it is not all the time too. Of course there are the headaches as well, but not quite as often or as bad as when I was first sick. Only found two for sure triggers…having my head in one position for too long or trying to enjoy a beer. I’ve never been much of a drinker but do enjoy an occassional good beer. Almost every single time I have one, I get slammed with a headache at around half a bottle. Oh well, one less thing I get to enjoy. My CT scans and MRIs were all fine, no spots, no questionable things, nothing at all. Which is good!

I agree that this thread is so incredibly helpful!

I have been notice I have shakeing hands, if I talk in my phone my hands start to shake and I cant control it, and it is less in my left hand but it seems if Im doing things that I have to hold my hand steady then it start to shake, it minds my of MS pathient that cant control their hands.
Does some one have that residuals?

Dear Friends:
I am using the word friends because I think this forum is the most wonderful thing since sliced bread!
Everyone sharing has helped me sooooooo much.
I have had GBS since May of 2006. I thought I was going crazy with all of these residuals (spelling?). I was paralyzed from my mouth down in 6 hours. I now am only paralized in my feet and am improving slowly but I am improving!
I did not realize stress can do so much. My husband died one month after I came down with GBS. I think my issues with his death has improved, but on my bad days it seems like everything is caving in again.
It seems that I have had at least 90% of the problems metioned above. I didn’t know they were from GBS!!!
It is a relief to know that the pain and everything else I have had is OK.
Thank you all for helping me today and every day since I signed up!!!!

Last night I was sitting on the couch and noticed that at times my arms would jerk almost like someone was tugging on them… is that a residual of GBS or was I just imaging it?:confused:

Rob, many GBS’ers and CIDP’ers have the jerking movement, so …….. rest assured, I’m sure you werent imagining it 😀

That usually happens to me when I am REALLY tired and/or attempting to go to sleep – once I accidently kicked my husband out of bed! (oops!) Sometimes it’s not just my arms and legs though and when a little muscle in your rib cage starts jerking and twitching it feels really weird but usually goes away. 🙂

I also have those weird problems with my right eye – it feels like pressure but after awhile the eyeball itself gets paralyzed and fixed in place. Most of the time I’m looking straight forward when that happens but sometimes I tend to look a little cross eyed. My eye doctor was freaking out, thought I had a problem with my brain stem because the eye wouldn’t dialate properly. The puzzle games I’ve been doing do help with the focusing and I’ve been trying to do exercises to strengthen the muscles too.

Hi Rob, Yes I had that in my arms quite a bit and for some period of time. I don’t understand it, but it was like mini chills or something. It was when my arms were at their worst though.

Let’s see;
Feet feel the size of basketballs and are severe pins and needles.
Legs, arms, and face tingle constantly to different degrees.
Torso (full circle) still has a very tight zone of paralysis that is constant and very uncomfortable. At times it effects my breathing.
Balance is a problem and I use cane to save embarassment in public.
Hands tingle and at times I can’t control fingers to type. Mornings are the worst.
And then there is my diabetic neuropathies which really fluctuate and make everything much worse. Low sugars and I fall down and can’t move. Five shots a day to keep from diabetic coma. My feet burn like hell and there are times I just want to end it all.

Have any other questions feel free to contact me personally.

michael, what are you taking for your pain? take care. be well.

gene gbs 8-99
in numbers there is strength

This is an excellent thread, so thought I’d bring it to the top for new and “old” alike 🙂 Does anyone know how we could get this as an “always available” thread?? Thanks.

I have not been here awhile, but now Im getting close to one year birthday of my dx GBS it will be 11 of nov, I still are numb in my feet and have terrible pain in theim. also now when I started to work more in my candlesworshop I feel strange pain in my arms, so maby Im overduing my self I dont know, yesterday my tingle in the feet got worse, but with more pain meds and good nightsleep with sleeping pill I got 8 hours rest and was pretty good this morning, was not so drunk when I went from the bed. my feet feel they are in tight sock even though Im not in any socks. I was hoping that this feeling would go away and hopfuly it does with time, time is all we have and enough of it to let the body heal it self. Enough of my crying:D I hope you my family is doing good I have not gone through all the posts but I pray for theim who is new digonosted and their family I know it is hard on every one and maby harderst for the familymebers to see their love one lying in bed and can do nothing. Love and Hugs to you all.
xoxooxoxoxoxoo
Helga
ps. if you like to see my candles that Im doing then go to my website [URL=”http://www.tofraljos.com”%5Dhttp://www.tofraljos.com%5B/URL%5D

I have weakness in my legs, pain and fatigue is a constant battle. I also have developed a rash over most of my body, which no doctor can diagnose. The pain on my soles of feet can become unbearable. I am ten yrs. post.

joanalice,

RU taking neurontin for your pain? take care. be well.

gene gbs 8-99
in numbers there is strength

Hillsmom. This site gives you what many of us have gone through and continue to, but I believe there are many that don’t need this site because they did improve fully. 🙂 So don’t look at the downside, think positive and we are here if you need us.

gene: I tried neuonton right after I came down with GBS. It did not help. I can’t some of the other medications due to rash and itching. I use Lidoderm patches, hot packs, and pain meds.

Post GBS ten years

Chronic fatigue
Depresion (Dysthymic), Anxiety issues
Pain in lower back and feet from time to time
Lower left lip out for the count
Neck spasms (ouch)
Left eye problems, perhaps a result of not closing my eye for a year:eek:

For me, it’s been 29 years since I had GBS. I still have weakness in my legs, especially my feet (my left foot is weaker than my right) and my legs can sometimes cramp up (rarely). My hands are also not as strong as they should be, but I get through life. Fortunately, I don’t have any pain, tingling or anything else like that. I do wish my recovery had been 100% like my doctor had told me way back when.

–Ric

Post Gbs Jan, 2000

Thanks for everyone sharing and participating . I had the full course with vent, recovered from total paralysis in about 6 months, but have never recovered from residuals. In fact, the older I get, I am now 60, they become worse. Stress seems to be the largest contributor to this, people say just relax, right that’s a word probably unknown to most of us. We’d like to, but the body will not follow. Well I do try , because I have to. After about twenty minutes on my feet or an hour or so of just being, my feet and legs are numb and I am severely fatigued. I think GBS is stress and no stress therapy or drugs seems to help. For me, No sleep, a husband finally on his way to rectal surgery after about 5 mths of chemo and radiation and still a long journey ahead. Dr’s do expect him to recover well and the cancer is contained in his tumor so far and his doctor does not expect he will need a colostomy bag.However, he’s lost 60 lbs and is incontinent as of now. He is also not much of an endurer of pain. Needless to say I am a short fuse(literally) as I seem to tingle all over especially in calves and face anyway, but this stressful situation has about taken me over the limits. I’ve had no choice but to suck it up here. When I inform his doctors of my situation and that doing alot of running around for appointments, etc they barely acknowledge. I now do all the shopping, run the family business and everything here at home. One of my sons helps alot, but he has a family and job to worry about. We have lots of friends, but you find out who your real friends are at times like this. I have a real friend who has been traveling for about 5 months, just back in town. She is one of the only ones who has watched me and helped me get through my initial bout of GBS. Most people, understandingly, worry over my husband and of course are concerned. She, knows what I’ve been through and how I am still broken, with no energy and alot of numbness and stressed to the max and she said “i’m more worried about you going down again than I am your husband.” Have you ever noticed that GBS’ers look exceptionally well and outsiders don’t see you as fatigued and sick?I have that looking great which I can;t complain about, but it’s just weird that you don’t look impaired on the outside unless of course you’re paralyzed.

My husband is worried about himself as I am, but sometimes I just need a break. As we live in southern california, the traffic is unreal and the surgeon is in the Los Angeles area- 95 miles one way. Pray that my husband will come out of this surgery and recovery process and that I’ll have the energy to do my part and for help to show up. I think anyone with GBS residuals which, I believe we all get sooner or later, will certainly emphathize with what I’m going through. For the survey, I have all the residuals explained in the prior threads, and stress and over doing it brings them all on. Love to everyone and all the frustrated GBS’ers who find out, not many other than the sufferers understand. Thanks for being there, because you know.

Bringing this back up for our new folks. Hope this is helpful.

I was hospitalized March, 2007. My residuals are:
-numbness & weakness in ankles and feet.
-numbness & loss ofmuscle control in left hand (I’m left handed)–this has happened recently.
-facial muscles and “breathing muscles” ache when I get exhausted.
-not much stamina.
-some days I have no energy at all.
And the most frustrating:
-It will seem like I’m making huge improvements, and then go backwards: three steps forward and two steps back. When this happens I get worried about a repeat of GBS.

Thanks for posting this as it’s good to know that these residuals are not unusual.

To the top, especially for With Hope:)

Good Folks,

I have a question for the group. I’m wondering if any of you have had the sensation that your hand (or foot or other body part affected by GBS) is not part of your body?

Just curious. My right hand occasionally “wanders away” from me.

Thanks,

Kelly

I think this means that your hands and feet feel like they are swollen, or too big, like when you can’t get your rings off. When you bend your fingers, they feel like the skin is too tight for them and if you look at them, they should look like they are big and fat, when in reality, they look normal.

[QUOTE=PianoWoman]I think this means that your hands and feet feel like they are swollen, or too big, like when you can’t get your rings off. When you bend your fingers, they feel like the skin is too tight for them and if you look at them, they should look like they are big and fat, when in reality, they look normal.[/QUOTE]

I occasionally get that tight feeling; this is something different. It’s rather hard to explain, and if no one else experiences this, that’s okay.

I am not sure, but I think I know what you are saying. Sometimes I have to look at my feet to see where they are when setting in a chair I may have my ankles crossed and my feet one on top of the other or something like that and I can’t tell where they are at all till I look. I have the squeezing sensation in my hands, feet and neck a lot. But that is something else.
Alma
GBS – MFv 1993 and 2004

Hello to all
I had GBS in Oct 1986 and was in the hospital for 6 months. I had a tracheotomy and was on a ventilator for 6 weeks. Very grateful to be alive. I need a lot of patience with myself and not compare myself with other people who have never experienced this disease. My residual symptoms make me feel that things are not quite right, like losing my balance and needing a cane. I get periodic bouts of anxiety and depression, my soles of my feet are numb. My throat feels like there is something there but the Dr. says I am OK. He did say that GBS patients do get that feeling in their throat because of the nerve damage. I felt better to hear that. I also get muscle aches all over at times. Have been hospitalized numerous times for chest pain. My hands work well but I have to work at my writing more than usual. I have had periods of time when all I want to do is sleep. I made a mistake by taking a night shift nursing job which messed up my sleeping pattern. I ended up sleeping over 24 hours at a time. I am now retired and have a good eating and sleeping schedule. I know it would help to get mild exercise every day. Have been lazy about that. If I would work again I would get a day job and make sure I took care of eating meals and resting enough. Most of all I keep a positive attitude and realize God kept me alive for a reason. Every day I ask God what is my purpose TODAY and thank Him for another day to serve Him.
Blessings to all.
Karenlouise

GBS onset January 2007

My residuals include
palms – constant tingling and numbness
feet and legs to knees – numbness, tingling, tight sock feeling increasing with physical activity.
face – tingling when I have overdone.

I thought these symptoms would be gone by now. I am afraid they will be with me forever. It is so hard to guage any progress. My onset was mild compared to many listed here. I was never hospitalized. So I assumed my recovery would be faster and complete. But these symptoms won’t go. Sooooo frustrating. Thanks for listening.

I noticed my error. My onset was January 2006. Almost my two year anniversary.

I too have problems with my throat. Sometimes it is so bad I am constantly clearing it although nothing is there. And it feels like I cant swallow properly when things really act up. It is better though, it used to be a constant thing that drove me batty! It was my neck and throat. Now it is just in my throat. The palette of my mouth will tingle, my face and lips too, especially when I get over tired. It is good to read that a dr told you this happens. At least I know I am not imagining things.

[QUOTE=karenlouise]Hello to all
I had GBS in Oct 1986 and was in the hospital for 6 months. I had a tracheotomy and was on a ventilator for 6 weeks. Very grateful to be alive. I need a lot of patience with myself and not compare myself with other people who have never experienced this disease. My residual symptoms make me feel that things are not quite right, like losing my balance and needing a cane. I get periodic bouts of anxiety and depression, my soles of my feet are numb. My throat feels like there is something there but the Dr. says I am OK. He did say that GBS patients do get that feeling in their throat because of the nerve damage. I felt better to hear that. I also get muscle aches all over at times. Have been hospitalized numerous times for chest pain. My hands work well but I have to work at my writing more than usual. I have had periods of time when all I want to do is sleep. I made a mistake by taking a night shift nursing job which messed up my sleeping pattern. I ended up sleeping over 24 hours at a time. I am now retired and have a good eating and sleeping schedule. I know it would help to get mild exercise every day. Have been lazy about that. If I would work again I would get a day job and make sure I took care of eating meals and resting enough. Most of all I keep a positive attitude and realize God kept me alive for a reason. Every day I ask God what is my purpose TODAY and thank Him for another day to serve Him.
Blessings to all.
Karenlouise[/QUOTE]

They get better. I know I am better than I was 6 months ago. Some things have improved, maybe not 100% but I have noticed improvements. Some days it feels as if nothing has changed and I am miserable or am afraid of a relapse because my residuals are so bad. But, I rest and tell myself things will be better tomorrow. Usually they are and I can get on with life. When I realize there has been an improvement, I get excited and look forward to the next one. I am 18 months post onset and not willing to accept that this is the way it will always be, I have faith still that I will continue to improve in some way.

I was wondering however, has anyone experienced this: My right hand is still a bit slow on the pincher grasp. I reach for something and know what i want to do but the actual grasping seems very slow and detatched from the rest of me. My left is not as bad…I am right handed….but I have noticed it a bit in the left as well. And my forehead and right side of my face in an interesting pattern is numb, feels as if I need lots of moisturizer. This did seem to go away but now is noticeable again.

[QUOTE=Jennie]GBS onset January 2007

My residuals include
palms – constant tingling and numbness
feet and legs to knees – numbness, tingling, tight sock feeling increasing with physical activity.
face – tingling when I have overdone.

I thought these symptoms would be gone by now. I am afraid they will be with me forever. It is so hard to guage any progress. My onset was mild compared to many listed here. I was never hospitalized. So I assumed my recovery would be faster and complete. But these symptoms won’t go. Sooooo frustrating. Thanks for listening.[/QUOTE]

Roxie…I am 10 yrs since GBS, and the residuals seem to be getting worse.
Pain in legs within the last years has gotten much worse, of course I’m not getting any younger either. Fatigue is a big problem, pain in feet gets so bad I can’t stand to put a shoe on. I have developed other conditions, which some docs say it could be because of the Immune system and how it was affected. Skin rash, and heart problems. No one can figure out why or what from. So if you are still collecting data I thought I would send my info.
Have a Happy New Year. 🙂

😮 I became a member to this back in Oct. 2007. That was the first day I returned to work after getting GBS in May of 2007. I still have residuals, I guess, less severe than others maybe but still annoying. My facial muscles still aren’t how they used to be. It’s a little strange but, I can’t really smile like I used to. I can’t kiss, whistle or drink from a straw using my lips. Saying words that have the letter “b”, “m” and “p” are a little difficult to the point I have to slow down my normally fast talk when it comes to these. When I try to smile it looks like I’m in pain– LOL. My legs and arms aren’t bad. My legs below my knees are slightly numb- I’m more ticklish on my feet than I ever was- pedicures are a complete mental feat to try to get through without laughing and squirming uncontrollably.There’s no pain, physically. But I guess I shouldn’t complain, right? Nice to meet everyone!

[FONT=”Tahoma”]Well, now let’s see…:rolleyes:

hands and feet numbness and tingling
upper lip at times won’t move
digestive system all messed up. (would love to have a normal …:eek: )
hip, knee, and ankle pain
drag right foot
words that start with b,f, v, and p sounds anything but
and still after all these years…
Naps!!!
[/FONT]

Hi KellyRJ

The feeling you are talking about is proprioception. It is a loss of sensation in that you don’t know where a body part is. I had it really bad and didn’t drive because I was afraid of not knowing where the pedals were. It can be in your arms or hands, legs, etc. It is common in spinal cord injuries as well. VERY hard to describe to someone. If I tapped my foot on the pedal a couple of times, it “reminded” me where my foot was and works for me now at night, I still have a problem there.

[QUOTE=gab111]Hi KellyRJ

The feeling you are talking about is proprioception. It is a loss of sensation in that you don’t know where a body part is. I had it really bad and didn’t drive because I was afraid of not knowing where the pedals were. It can be in your arms or hands, legs, etc. It is common in spinal cord injuries as well. VERY hard to describe to someone. If I tapped my foot on the pedal a couple of times, it “reminded” me where my foot was and works for me now at night, I still have a problem there.[/QUOTE]

Thanks for the confirmation. While it is unfortunate that we have these symptoms to share, it’s nice not to be alone.

On the more abstract side, I find it rather amazing that the body can do this. It’s the reverse of “phantom limb syndrome,” I’m supposing–instead of the body “thinking” a part is there that isn’t, the body “thinks” a part is gone that is still there.

I’m glad to hear you are driving again.

Carolyn, my left foot is weak, need help lifting it up to put on sneakers, also with help. 32 mos post GBS attack. ahve tingling in legs, weak wrists and fingers. Was super typist, now one finger and tire easily. Can’t walk yet. Have axonal damage.

Peggy

3 yrs since diagnosis…residuals..#1-still alive..#2..enjoy every day #3..don’t take anything for granted..lol..and don’t forget to have fun..

..oh, and foot drop, chronic fatigue, and partial facial paralysis..

..took the docs advice..he told me to find a better way to get around..so I learned how to ride a motorcycle..:D ..life is good..