newbe here for the first time

Your legs and feet will be the last to recover. Rest is important. Welcome to the forum!

hi & welcome,

steroids are counterproductive to gbs. gbs stands for Get Better Slowly. as jan says, rest & a lot of it is the fastest road to recovery no matter how slo you think it is taking. take care. be well.

gene gbs 8-99
in numbers there is strength

Welcome to this forum. You will find a lot of very helpful people here. Gene is right, steroids are not effective with GBS. You need a dose of patience like we all did. It takes a long time for things to come back and it sounds like you are doing very well right now. Take care, Gabrielle

Whoa… slow down, a whole lot! This illness will build patience in you whether you like it or not. Please take lots of time reading many posts from people in various stages – including myself at 10 years post. You may need to be on Neurontin for many years. Myself, I have switched around every few years finding something new and better, then go back to the old reliable, etc.

So please, sit down, take a nap, and then come back here and read some more. When you have questions, get frustrated, or just need to share, we are here for you.

Welcome to the forum!!! Where is Howell?

welcome to the forum. I just signed up last week with a new diagnoses of CIDP in the last six weeks. They thought at first I had GBS and now changed the dx.
I am a large dose of Prednisone 80 mg a day and they say that is the best treatment for me along with CellCept.
My legs are weak from knees down to toes and arms from elbows to fingers. I feel electtic shocks all over most of the time. I’m using a walker part time and will start PT next week.
I have no idea which meds are best for you, but I do wish you luck and prayers over the course of your treatment.
the one thing everyone keeps telling me is {I have to develop patientce]. that no matter what when you are dealing with neurological issues it takes time.
I, of course, want an instant answer and cure. Have found this whole process to be fairly scary.
I have found this to be a very useful site and extremely helpful info.

ween yourself off the steriods as fast as you can, they are dangerous (my opinion)

Joe Flaherty I am not a doctor.

Hi Ron, Welcome to The Family. No steroids for GBS, as others have stated. The ones who recovered quickly on roids had the chronic form or sister syndrome to GBS, which is called CIDP. U of M–which neuro did you see? I go there, as well as others on this site. There are no fast recovery meds with GBS, unfortunately. I agree with others, rest is your best friend and is best for a better recovery. If you try to push recovery time-it will push you right back, sometimes back into a relapse-been there done that:o . Feel free to ask as many questions as you have or just vent when you need to. Take Care.[COLOR=yellow]GO [/COLOR][COLOR=royalblue]BLUE!!:) [/COLOR]

ron,

each of us recover at different rates, so it is impossible to say how long nor to what degree you will recover. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Ron,

Welcome to the group. I am on three different steroids right now. Prednisone what I am told helps with the nerve inflamation. I get anabolic once a month and decadron also. I am in the curve of getting weaker again but all I can do is just grin and bear it. Nothing else I can do but I just keep plugging along. I am in the very fatigued stage also. Just take your time and don’t rush into it. Take care

Ron as the others have said Welcome to this forum. My onset of GBS put me on life support quickly and within 9 weeks I was back home. That was followed up with OT and PT and I am still healing slowly. I was told that the sheath of the nerves healed a mm a day and that slow repair would take a 6 foot man longer to heal then it would for my 5’4″ frame. The first things to show problems like the hands and the feet are the longest nerves in the body and therefore the last to heal. So far that has been the case for my residuals. I am still not back to work because of that problem, but also the fatigure which is getting better. At first I slept 20 out of 24 a day. Now I still need 10 hours of sleep in 24 hours and don’t seem to need as many naps a day. You will learn to pace yourself. There is no way you will be able to tell work how long it will be. You should also, when you go back work a few hours and gradually increase those work hours a day. You might want to keep a Journal to see how you are slowly progressing with your healing process. Now it is coming back quickly but then it takes longer and longer for you to see big steps. If you keep a journal you will be able to see a steady climb with some set back. We all have good and bad days. Now I see things not get better day by day or even week by week but now month by month. It is depressing so keep the communications open with your Doctors and Rehab. Also use your sense of humor to get you over those bad days. It is frustrating and you need to stay possitive through all this. Don’t be ashamed to ask for help! We are here to give you support in any way we can. We will be realistic with you also!

ron,

pls note that john has cidp, not gbs. steroids can help cidp. it is best even for cidpers to 1st try scheduled ivig or pp B4 going to steroids cuz of their side effects. take care. be well.

gene gbs 8-99
in numbers there is strength

Ron,
You will walk! My ten year old has had many ups and downs in the past 14 months with cidp. Once you get a schedule of ivig that works for you, things will look up! We currently are going to go with approx. a year of loading doses and go from there. Good luck.
Dawn Kevies mom

Hi Ron and welcome,

It’s very nice to meet you. I am the liasion for Southeast Michigan for the GBS Foundation and live in Ann Arbor. If I can ever be of help or you would like to contact me, my phone number is 734-929-4653 and my email is jerimyschilz at hotmail.com.

Take care.

Jerimy Schilz

I agree with all the statements on the board. I am (or was a construction worker) It was hard on me to know that I will never be able to do that kind of work again. Be patient and let things come in little bursts. My legs like yours have not come around to where they work right. I have alot of trouble with steps and I can not walk very far with a cane. I waddle because I drag my feet along. Trip alot and it is constant worry that I am going to fall. Take your time things come slowly. I lost 40 lbs in the hospital have gained it back and then some but the muscle tone is not there. I work out with my sons weights everyday trying to get some back. I know one thing I am a hell of alot weaker than I thought I would be and it comes back slowly.

Joseph
gbs March 2007

Hi Ron ,just wanted to see how it went at your doctors appointment?
Ihope you got some good news to help you deal with this awlful disease.

Ron,

I still have to use a walker just for very short distances ,like going to bathroom and to my bed .I have to use a wheelchair for everything else.my strength has just started to come back enough for me to move myself in my wheelchair .It has been 16 months since my onset i have had several good things have happend to me over the course of this time and also have had some setbacks .I know what you are saying about returning to work .i was a parts manager for advance auto and also owned a auto repair shop to.that i had to give up .i was crazy trying to do to much so i could return to work to no avail .my neuro said for me to get rest and only do as much as i could with my physical therapist.you will have to be patient and your movements will return slowly that is so very frustrating.if you want you can im me anytime you want to just have someone to talk to .my msn info is [email]greasemonkeyfred@msn.com[/email]

My neurologist says that the NCV/EMG results lag behind improvement and that the most important thing to consider is how a person is. So celebrate that your stamina is better and do not worry too much about the EMG/NCV. The point of doing it is as stated to have a baseline to look for worsening or the degree of damage not so much as an indicator of current status.

Each person is different in the time course to recovery because the distribution and amount of damage is different in different people. Some have axonal damage and others not, etc. It is so hard to be patient, but there is no rushing recovery, I am sorry to say. Your body will heal when it heals. We have all been in the place of wishing we knew when/if life will get back to normal. Keep trying. Keep hope. When I was even earlier in this, it helped a lot to read the Success Stories line to read that people do get better.

With Hope for cure of these diseases.

I don’t know how bad my case was to yours, but I think the sooner your off meds and understand what your body is telling you the better…I’ve been dealing with this since the middle of october (this year).., and I’m doing therapy outpatient, and exercises at home, and things are getting better…I’m tryin not to overdue, but you bein in minn. now we have snow to move, and other stuff, so I consider this good exercise as well..I ususally make a little goal everyday, and try not to overexert..good luck deanop

p.s. I had a nerve/reflex test last week, and it showed I had really poor brain to nerve speed? And nothin for reflex to speak of, but I’m a walkin very carefully… Now this week I feel I’ve improved significant..You say you got yours the middle of october? I had a physical and flu shot on the 15th, got sick flu like and was in the hospital at st marys by the 24th…deanop

How are you this day?

Ron ,

Just wanted to check in and see how you are doing .Im glad to see that you have friends to do the things you can’t do right now .Hope you do get better soon .Please keep us informed as to how you are doing .

Hey Ron, I came down with gbs around the 24th of oct..2007 …i was in the hospital for 5 days at st marys in duluth..they wanted me to do in patient rehab for 3 weeks, but i decided to go home and do out patient 3 days a week…I think I used a walker for about a week or so, and started walking (very carefully)..I stick to an exercise routine at home and therapy…I find I feel better after I do exercises generally…I’ve got pretty bad tingling in hands and feet and my equilibrium in my head feels off (hard to describe, but feels like i’m on a ship rocking back and forth)..most of the numbness in other areas have subsided like my tongue/nose/back/butt etc are gone..I am getting stronger everyday as the pt/ot people are grading my abilities at 3 out of 5’s versus 1 and 2 out of 5’s just 3 weeks ago..;.don’t know about you, but i noticed my sleeping was way screwed up to begin with, but now can actually sleep about 6-7 hours at night, and a 1-2 hour nap daytime…It’s a big step, getting away from the walker..be careful, and be proud of yourself….i’m sure you will get all your strength back in time…I’m goin down to the u of m (my old school), to see dr Parry? on a study this spring…good luck..give feedback as i’m interested in comparing our rehabs…deanop

dr. parry is one of the best you will ever find. take care. be well.

gene gbs 8-99
in numbers there is strength

Ron
I do still have the numbness and tingling ,my strengh has returned some but nothing like it was before.The strengh was my first thing to start returning .I had a checkup and my neurolgist says my reflexes are comming back now but I cant realy tell it .I hope you recover faster than I have .Just keep trying and you will see improvements.

Good for you. I’ve been making goals i want to reach. some i do and some i don’t. PT is really helping me.
MD not sure if increased muscle weakness is from high dose of prednisone or the cidp. guess time will tell.
Keep on trucking, so to speak, and we will both get there.
my xmas wish is to feel my feet and be able to walk again.
God’s Blessings to you this day

hi ron..sounds like your getting along great..It won’t take long now once you get the hang of it again.. I’m a walkin, but therapist is still working on my gait as well..Its just gonna take time…keep working at it…deanop

Hi..Just wondering if things improving for you…are some of the numbness / tingling going..deanop

Sounds like your doing good…I can’t leg press near that right now..Although the pt/ot don’t really have me weight lifting per se…I had numbness in my back for a while, but o.k. now..my hands and feet still tingle…gets worse i think in the evening..the finger curl i think might still be muscle weakness, as same happened to me…ot has me stretching fingers with rubber bands/squeezing clay like stuff.., that has helped alot..I’ve still got a lot of shakiness in my writing (depending on time of day)..don’t know what your writings like..the mrs’s says the vitamins pretty much cover everything you mentioned…I’ve really noticed week to week, that my strength is coming back…Tommorrow, i have pt/ot for cou-ple of hours, then off to the clinic to see another specialist..I’ve had this approx. 8 weeks? i do therapy 3 times a week and a couple hours of exercises/stretching morning and nite…I know rest/rest/rest is important, but I’ve also found with me, the exercises are really helping..I’m doing lite weights/pilates/big ball/exercise bike 10 min/stretching/and other stuff…One problem pt is working with me is getting full flexibility in my hips. But, I never was all the flexible..As far as the driving, it sounds to me like you shouldn’t have any probs re the driving, unless there’s other factors…good luck, hope all goes well…deanop

My specialist cancelled yesterday, spose it’s the holiday season, but i thought it was good of her to call to reschedule..We had sort of an informal discussion, and I learned more from that, then all of my doctors visits combined..I’ve done same things in therapy that you mention, and yes there are times the tingling gets worse (if I overdo it)…But I can tell you it is getting better…I sent you a message regarding driving…I think if you take day to day/week to week, your numbness will subside, and feedback from p.t./o.t. should give you an idea if your getting stronger..they know what they are doing (at least mine do), so hang in there..deanop

Ron,

I went through two bouts of GBS, one in 1970 and the second one last year at this time. The recovery from this attack was much slower. I too had to progress from a wheelchair to a walker to canes to walking on my own. The pt/ot were always concerned about “drop” foot and my potential to trip. As the others have indicated, rest is important because when you are tired, there is greater potential to take a fall.

As far as work is concerned, perhaps your employer should look up GBS on the internet and learn about the effects on the body.

Keep up the hard work. Remind yourself about where you were rather then where you are going

Hey Ron..Hope things are getting easier for you….Especially at Christmas, I’m thankful, for what I have and keep looking forward to spring, and how much better things will be..I have been kinda measuring by the holidays…Halloween is was so sick (hadn’t been diagnosed properly yet). Thanksgiving I could barely choke down the turkey, let alone walk and function..Now its chrismas, and we had a foot of snow yesterday, and I Blew out the driveway and still had enough left in me to exercise and enjoy a little bit of holiday…I spent the other time resting and laying in bed…Today I feel pretty doggone good,, and going to brothers house, kids are going sliding, oughta be a hoot! Take care and be well..deanop..P.S..Easter.;.who knows how strong we will be…

Excellent…I am very careful walking outside of the house…My number 1 concern is the fall thing…bad! If you can walk a little bit, you will get there.. I’m pretty worn out today ,, as we got another round of snow and had to blow out the driveway again today,,.. Christmas was great: I went outside at brothers and watched all the kids sliding: I still forget that I’ve got a ways to go, as I laid down and made a snow angel, and couldn’t get back up… Oh well, next Christmas I’ll be sliding with em.. Went to pt/ot therapy yesterday and turns out they didn’t renew orders (paperwork snafu), so sat around for an hour or so… I think they are gonna have me for another six months.. How about you, have they given you an idea.. I told them my goal is to be 150% (better shape than befor this if possible).. and told them to make me a better golfer…! We will see…take care/be well. deanop P.S..I found out my p.t. sister’s, sister in law has gbs.. Seems like I’m finding out way to many people I know are getting or have had this stinking thing…

Well thanks for the kind words, I guess that is what keeps me going is hope and faith; because what’s the alternative… I guess I could sit on the couch, but I think the first couple of years with this is the most important in getting better.. Probably the first six months!

Physical Therapy sounds pretty similiar to yours..I usually ride a bike of some sort for 10-12 minutes, then lay on my belly on a cot, stretching my back, as lost some flexibility.. My pt is really good, and has diminished some pain issues I’ve had (probably from all this snow removal).. She’s really trying to get full range of motion, and on most things, I’m more flexible than ever… I do different stuff all the time, and she gives me take home exercises with diagrams for different muscle groups…I’ve been doing balance stuff, high stepping, marching, obstacle courses, etc..

Occupational Therapy is working on upper body strength..do weight lifting like you, but like I say I’m not lifting a whole lot of weights but am building slowly…Here again, they have homework stuff I do, like I’m doing hand grips, squeezing clay, and stretching fingers with rubber band.. I bought a weight bench, and stuck it in the dining room, so am doing 2-3 reps morning and nite of the same thing I do in ot…

This morning, I’ll do about an hour of stretching, biking, lifting…then do some pilates (theraband), and I bought a rubber ball (the big kind for stretching range of motion)

It sounds like a lot I spose, but I don’t overdo, and realize this isn’t a race, but a marathon of sorts, with the end goal of getting back…And after lunch, I’ll probably sleep from 1-3 or so…That’s about it, and start over with exercises tonight (slightly different than AM…

I’m getting a little scolding from pt about overdoing it, but so far been getting stronger with hardly a setback..I guess I’m human, and want to get better sooner than later…

I’m interested in hearing some different stuff you been doing thats helping, and once again sounds like things are coming along good for you..deanop

My wife and I like your philosophy, andl so true it is…I’ve had a sinus cold that turned into a chest cold.. Well, guess what things started zinging, numbing, more.. I was worried that possibly a relapse. went to see a neurologist, and they kept me in the hospital overnight friday/saturday…The neurologist is pretty sure my immune system just reacting, and not having a relapse, I guess a person gets scared of a relapse, and I’m glad I went.. I’m still watching for signs, but he says its pretty rare…He’s pretty sharp, so I think I trust the expert, and am gonna have some more follow ups.. His advice, stay healthy, no stress, don’t catch a cold, and get plenty of sleep…(kinda sarcastic, kinda trying to say i’ll be fine)…

On the brighter side, in er, I actually had a reflex, on my right leg, which to me was really exciting…haven’t had one since before all this began…I was wondering if anything woulld come back,… I’ll get back with more news, just gonna take it as it comes…

‘Hope there was something in this of value for you, as well…take care and be well..deanop

Hey Ron, good to hear you are getting back to your old self…My road may take a little longer, but I’ll get there.. I had some increased numbness, but no weakness last week, and the neuro guy told me same thing not to worry..Sounds like your outlook is great, good luck and nice chatting with you as it has been helpful for me…Best wishes for 2008 …sincerely deanop

Just hang in there, the lower legs and feet are the last to improve. I was in a wheelchair at Christmas 2006 and am now walking again, even without a cane and went to Mexico on holidays for 2 weeks in November. My lower legs were extremely week last spring but daily physio sure paid off. I still need soft anke braces but am practicing walking barefooted more and more. I still have considerable altered feeling in my ankles and feet but this is improving as well. My toe drop is also slowly improving and I can now wiggle my large toe, which I could not 2 months ago. Stay with it and try to stay off the steroids, too many side-effects.

Paul

Hi Ron,

Great to hear you are getting along so well…I was wonderin if those anti embolism socks (like the one your hospital gave you ), would help with the cramping, as I too had that prob.. I think my feet cramp worst at nite when I lie on my back or belly for an extended time… Also, I’ve found puttin a pillow between my lower legs/knees has helped with my issues…

Things are rolling along pretty good for me as well…Its been about 5 months since this stuff came on, and aside from fatigue, and some numbness in feet/toes, and a little in hands..I guess no complaints..take care deanop