Guillain-Barre Syndrome GBS

I hope you get my message. My daughter is almost 2 and I'm hospital with gbs. She's in a fair amount of pain off and on. I know every patient is different but I would like to hear more about your recovery and experience. Do you remember the first time? How long were you in pain each time? How long before you walked again? And how far apart were your recurrences?

I am so sorry for you and your daughter

yes I had a virus june 1st ,in bed for 4 days and started to come out of it and on the 6th day.  then on the 8th 

i was in a great deal of pain in the night.  so painful I emailed my dr and he sent me straight away to a nurologist. the worst pain was with me for about a full week always at night might of been longer cant remember and

the only thing that helped the pain was a very warm bath.  must of relaxed the nerves.

so give her a very warm bath.

also i kept a cool bucket in the bedroom to put my feet in it when they burned so bad could not keep a sheet on them.

that helped also.  none of the pills they gave me helped

i had to use a walker and wheel chair at the drs.

Im guessing but july 7th started walking without the walker and driving july 15th.  probably should not of but i just got out of the chair and picked up the keys and went out to breakfast. 

its now feb 2017 and i would say most of the issues are passed other than   feet still tingle and if i do to much i get exausted. so i keep a bucked of water in the bedroom at night . and if i remember soak my feet in ice water while watching tv just for a couple minutes.  seems to take the swelling down quickly.

please keep me informed on how you and your daugher are doing

aloha sue

 

I was in so much pain that within two days ibwas seen by neuroligist whom diagnosed me gbs. Recovering now 3 months lots pigs needles and feel like I am weak alot but hoping for best

Hey banksies, I am a month out of the hospital and have shakey hands. I have a follow up with my neurologist and am hoping to find out how to improve this. Let me know if you've found anything out I will let you know if I find anything useful

Paul, are you still on this thread? I'm desperate for help and feeling very frightened. I definitely go backwards and forwards. I'd love to hear about how you are doing!

Thanks, Mel

Hi, 

Yes I'm still on here. I showed incredibly good results after high dosage of immuno therapy (Prednisilone) but have come close to relapsing when I dropped from 60 eventually down to 10mg. If it happens again I was be hospitalised (according to my Neuro) to undergo IVIG. Hopefully it won't come to that. Every day is different, it is scary but keep in contact with your Neurologist. Try not to overdo anything as fatigue is exhausting and it takes you a lot longer than before to recover!

Best of luck.

Wow Paul, I honestly didn' t think thay you would get back to me, so first of all thank you very much! I gather you were diagnosed over a year ago (?) so I'm very sorry to hear that you are still struggling. I'm going to apologise in advance for the barage of questions I have for you. I haven't really found anyone to turn to as the doctors seem somewhat uninformed.

First of all, can you walk now? If so, how long did it take to regain your ability?  I more or less my lost my ability to walk (I hobble, as you said) more than a few steps 2 months ago. My legs simply buckle or go rubbery.  The odd thing is that I would seem to make progress and then if I "overdid" it, boom -- they would go backwards (sometimes a LOT) again.  This has happened a few times now. Did this happen to you, too?  It's incredibly frustrating and depressing. I have some odd sensations in my arms, too but mostly just an awful burning (which I frequently get in my legs.)

Did you have abnormal nerve conduction tests?I know that some doctors diagnose GBS by omission. I alos have pain in my ligaments, esp. behind my knees and I try to hard to mix moving my legs a bit so they don't get weak and resting them so I don't make things worse.  

I have been blessed with 5 children and an incredibly supportive husband but I spend so much time crying these days as I can't begin to care for the youngest two -- so hard.  I have a wheelchair, which helps and on good days I can walk 20 steps or so holding on to it.  

Thanks again for responding. Here's wishing you a full and speedy recovery!

Hi, I should probably clear some things up straight away. I was initially diagnosed with GBS after 2 rounds of NCS (results of which were abnormal, scanty and absent) by a Neurophysiologist in LGI (Leeds) but my condition worsened and after several other examinations, and MRI scan, 2 ultra sounds, a lumbar puncture and several blood tests (carried out between LGI and the Heath Hospital (Cardiff)) it was confirmed that I have CIDP. I was immediately prescribed high dosage immuno therapy (60mg) which took 4 months to work.

I never suffered pain or sensory loss. I could always feel everything, just not move.

I can truly appreciate how you feel, as I would hobble along and then fall over, bruising/cutting myself. It was terrible. I went from being incredibly active, very strong, very fit and very healthy to nigh on bed ridden, not able to use my hands, lift my arms, or lift my legs. Once the drugs started working I slowly made improvements back to being able to (very slowly) walk. Only recently have I become able to properly jog again, although the fatigue is something that still wipes me out. I am now quite capable of walking 2 - 3 miles on the flat, although steep inclines take me a lot longer (whereas before I could sprint up them).

I have started weight training again, but am currently only lifting half the weight I use to be able to, without the fatigue overwhelming me. I have terrible trouble remembering that I am ill, and have overdone it several times, paying for it in aches, pains and reduced motor function. The best thing you can do is rest. Do what you can, and yes, some time be prepared to push it, but know that the next day (or 2) will involve a lot of resting.

The closest I came to relapsing was after my stag do. I although I dont avoid alcohol now, I don't drink heavily, and I steer clear of high volume alcohol as it is a neuro toxin. I truly believe the reason for my near relapse was me pushing it too hard (2 very busy and heavy nights of drinking and paint balling).

As I say, the Prednisilone prescribed worked well for me, and there are plenty of other options that I can move on to when it comes to weaning off them. My symptoms started manafesting around Christmas 2012 and I was diagnosed with CIDP in June 2013, I was back in full time work in November 2013 (where I still work). The doctors thought I should have phased myself back in, but I don't see the point in doing things by halves.

I started writing a blog about it but slowed when I started showing improvements, and stopped completely when I started work. I should really carry it on, but it's a long tale that I have to tell.

My advice is as follow, unless you have absolutely amazing GP's who know whats wrong with you then deal with the as little as possible. They are paper pushers who do not deal with our condition regularly enough to have any great knowledge on the matter. My local GP Googles it in front of me and my wife. I was absolutely furious, and refused to see him again.

I now keep in monthly contact (by email) with my neurologist with the express knowledge that if anything goes wrong, he wants me in hosptial right away. My advice as above, only deal with neurologists. Ask around, and make sure you find a good one for your region.

My wife and family were, and are an enormous support to me, and I know I wouldn't be here in the position I am in today without their care, help and support. I am glad you have such a great support system there for you too. I wish you a speedy recovery, it is possible, and dont give up until you've spoken to a neuro and got the answers you want.

All the best - Paul

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

My goodness, Paul -- what an ordeal you have been through! I am thrilled to hear that you able to walk a few miles now and even jog!  I can't even imagine walking to the end of my driveway in my current state and some days, the depression really does get the best of me.  I was just like you, super active, fit and healthy. Walking has always been one of my favourite hobbies and stress relievers, so straring at these four walls all day is tough.  I've read about CIDP and I'm so happy to hear that there are medications that can help to combat it. I;ve also read that it can go into remission, so here's sending you some positive thoughts and prayers!

As for me, well I should tell you that I actually live in the US now (I'm from the UK)  I joined a support group here, but noone ever seems to be on it.  The doctors don't actually know what is wrong with me, although GBS has been thrown around.  My symptoms were textbook for GBS, sudden onset starting in my feet, then within an hour I couldn't walk as my feet and lower legs "just weren't working." They felt wooden and rubbery and my legs ket buckling.  It rose futher up my legs in the next day or two and of course I was put in hospital.  I had 2 MRI's (neck and back) as well as a spinal tap (that headache afterwards was not fun!) and a TON of bloodtests.  They meant to do a nerve text also, but then didn't and sent me home!  I just had one a few weeks ago and it was normal.  The only thing I can think of is that if it were GBS, my nerves healed in those 2 months but my body hasn't caught up yet?? I don't even know if that's possible.  I will say that the anxiety of not having a firm diagnosis is as bad as not being able to walk.  My anxiety is through the roof, which is tough all around.  It's seems absurd to me that I suddenly couldn't walk and still can't and noone knows why.  

Anyway, I've seen 2 neurologists, my GP and most recently a Physiatrist and they are all stumped.  I'm trying to find another neurologist but noone here is currently taking new patients.  I'll keep trying to find another neuro however.

I think that your blog sounds like a great idea! Goodness knows there are many people out there who would love to hear about your successes!  It really is so great to hear that you are "getting back in the swing."  Here's wishing you all the best and again, thoughts and prayers for a full remission!

Take care, Melanie

Hi Melanie!

I just joined this site when I read your discussion. My situation sounded a lot like you. I had what they think was a mild case of Guillain Barre though I have never had a confirmed diagnosis. I had 6 MRI's and 2 EMGs that were normal so that ruled out other disorders but never confirmed GBS. I also had a spinal tap that resulted in a hospitalized migraine. Not fun! I live in the US and have the best neurologist in my area. I am 5 months out with this. It started in my toe with tingling then moved up me leg with numbness that caused weakness in both of my legs along with my arms/hands to a lesser degree. My back,neck,and head were eventually affected somewhat. Things are much better now. Great PT and symptoms continue to improve along with my strength. I never have gotten the official diagnosis but my Neuro refers to it now as a possible mild GBS. Hope you are doing better. This has been a frustrating journey but I am feeling more positive and stronger these days! Hope you are! 

Hello Tarhealing! And thank you so much for your message! It's nice to know that I'm not alone out there, although that said, I wouldn't wish this on anyone.  It is so frustrating, isn't it?  I've read more than a few accounts where people were diagnosed based on symptoms alone and I do wonder if a different doctor would have called it GBS from the get go? They apparently did my spinal tap too early (it can take up to a week after onset for the protein to show up and they did it on day 2) but when they offered a second one, I ran the other way (well....wheeled myself....I've discovered that you can't make a dramtic exit in a wheelchair  And yes, the headache was BRUTAL!!  It took 2 months for the EMG which was ok, of course, but every time I googled my onset or symptoms, GBS came back EVERY time!  I think for me, not having a firm diagnosis has been extremely difficult.  I suffer with anxiety at the best of times, so when I would be out in my wheelchair -- say at the school for an event -- everybody would want to know what was wrong. The minute I'd say "They are not sure," it was always the same response -- "Really? Have they checked for MS? Are they sure it's not ALS? A brain tumor?" No joke. For someone with anxiety issues this was NOT helpful! Anyway, God willing (and I don't want to jinx anything) things are slowly improving. And I mean slowly.  The pace of recovery is so hard to deal as it's painfully slow and I keep reminding myself that I have to be patient. Some days are better than others and it's not unusual that I'll have a day or two where I can "push" my legs a bit and then a few days where they don't want to do anything as they feel as if they'll "go" again. Did you have this experience too? It can be so depressing that I just want to disappear for days on end.  I'm used to being so incredibly active and seeing how exhausted my husband is looking after the children only makes me feel guilty, too (he's been incredible all along.) Soooo frustrating! Anyway, I'm so happy to hear that you are improving! Are you able to walk unassisted yet? May I ask where in the US you are? We are in PA.  Anyway, all the best and hang in there!

Melanie

Hi Melanie! I could actually walk unassisted the whole time but it was very limited. I thought I was going to be paralyzed eventually because I was struggling pretty badly to walk. I had anxiety too when this was hitting me at the beginning because I didn't know what was happening and how bad it would get. And I had a few doctors along the way think that I was making this up because my scans and labs were not conclusive although my symptoms were. My lowest point was when my speech was affected and an ER doctor thought that I was doing this on purpose because I was able to pronounce some words more clearly but as I would talk, my speech would slur-my mouth felt so tired.They treated me like I was stupid and drug tested me. It was so disheartening! Most of the doctors I ran into early on did not understand why my symptoms jumped around so much. They said that this did not make any sense. They did 6 MRIs on me and 2 MRAs. They said they had to rule out MS, ALS, and tumors-the wait was horrible but I knew my symptoms were an ascending attack.  They did my EMG too early (1st week) and probably too late (after I had been recovering).  I  was fortunate to get scheduled for PT with someone who had treated a couple of GBS patients. It has been the best thing that happpened for me through all of this.  I have been able to get back to work and am jogging again. I'm just dying to race again even if it's a small race and I'm slow. I just don't want to over fatigue myself so I'm waiting until I know that my body is ready for it.  I laid around so much when I first suffered with this because I was fighting so many symptoms attacking my body. It was overwhelming and terrifying. I have been so happy to rejoin my life again even though I am still recovering. Oh, and I'm in NC. I planned to go to John Hopkins to search for help & a diagnosis when my symptoms started to back off and I started to finally recover. When did you first suffer with this? I hope your pace of recovery speeds up!

You're jogging?! Oh, I'm so jealous! God wiling that will be me soon enough.  I'm such an active person usually and avid walker/hiker with the kids, that this has been so brutally hard. Not that it would be fun for anyone , mind you. I was so excited today because I actually walked on my own (about 15 steps) from the bed to the ensuite this morning. I no doubt looked ridiculous as I waddled a bit like a duck -- but still a small victory. My legs hurt a lot and still feel quite leaden, but bit by little bit. I try not think about the fact that I couldn't walk into the grocery store or play in the park if I wanted to -- things I usually wouldn't think twice about doing. But I am quietly thrilled that there seem to be some small victories in it all. (God willing -- still don't want to jinx anything!)  I was never truly paralyzed, but at my worst, even the walker was virtually impossible as my legs simply buckled and "didn't listen" to me.  Baby steps all the way!!  How long until you went from barely functional to being able to drive again, etc? Or walk reasonably around the house?  This all started on Aug 26th for me -- so about 2 1/2 months ago.

I know what you mean about the doctors not believing you sometimes. When I was admitted I told this one doc I was worried about GBS (it had already spread from my feet to my knees) as I said I had been reading about it. At that point he smirked and very condescendly said "Oh you've been reading about it, have you ? So now you are "getting" the symptoms?"  The next thing I knew, he sent in a social worker, who told me that the doctor had said I was feeling "overwhelmed" and might need some counselling.  I've never been so angry!! By the next day, the near paralysis had moved to above my knees and into my arms -- so frightening! All of this and a doctor who thinks you're making it up.  Ugh -- anyway, on  happier note  my physiatrist has been great and hope will start me on PT this week.  It sounds as if it has worked wonders for you!  

Have you found that the quality of you pain has changed over time? It started with a lot of nerve pain for me -- severe burning was just the worst! But these days it a deep, achy pain, deep inside my calves and a lot of ligament pain, too. Just a reminder that I'm not quite there yet.   I try so hard not to get down and depressed, but as long as I see some improvement, I'm trying to keep my head above water. I know how blessed I am that it wasn't worse!  And yes, I think my pace of recovery is actually speeding up. Did you find that, too? I seemed to be on a plateau for the longest time and then these past 2 weeks it seems to be improving.  Did this happen for you, too?

And NC! Of course! I should've known from your name

All the best,

Melanie

Hi Melanie!

I'm so glad you are improving! I plateaued for a long time it seemed then started gradually being able to do more too. Everything started for me around June 15th a couple of weeks after I received a Tetanus Vaccine. One month later, I was at my worst with slurred speech, difficulty chewing, burning pain, and weaker overall. That's about the time that I had more trouble with pressure in my head and face, difficulty turning my eyes and blurred vision.  I could not drive for several weeks because I was too weak and my vision was bad even though my optic nerve was perfectly fine. After 2 months, I was driving again though my leg would shake as I would hold my clutch in at lights (at first I was discouraged but then I thought this was probably good exercise).  I made it back to work about mid August because my vision was no longer impaired and I was regaining my strength. It was hard!  I stand all day and the only thing that got me through 2 work days was the PT that I was getting twice weekly. It would take me about 4 days to recover from working 2 days then after I worked my back would tighten and I would have to work to stretch it back out, rest, get better over a few days, then work again and mess it back up. PT really helped me to break the pain cycle that my body was trying to get into and work exercise into the mix without over fatiguing. 

When I first got to PT about the time I went back to work, my pain level was about a 7 or 8. My pain has changed tremedously. Now only around a 1 or 2 at worse. It is amazing! I really toughed out much of the pain only taking ant-inflammatories because I did not want anything to impair me when I went back to work or cloud my recovery. Early on they gave me a muscle relaxant but that never really helped my symptoms because my muscles were already weak - I didn't need them to be weaker. Massage helped me a lot along with PT. Stetching my dura through PT made the burning in my back eventuallly stop.  My back was tightening to compensate for the weakness andlack of endurance.  I think that my recovery began turning around after 2 months and really took off after 3 months.  It's been slow though. I started lifting a 3 pound weight a couple of times with each arm every other day at home. I tried to run on the treadmill for about 2 and a half minutes but that was too much. I tried the elliptical but that was worse.  The best for me was the recumbent bike with no resistance-so easy on my back. I would just do that at the gym for less than five minutes at first then I could barely walk down the steps to my car. My PT had me to switch to walking in the pool. At first it was hard for an active person used to running races-5ks, half-marathons, and marathons-to accept only walking in a pool but it was what has gotten me back to being able to jog again with minimal pain. She told me it would be a work out and she was right! Felt like I had run a marathon. Just less than 5 minutes walking back and forth for 10 feet or so was a work out. Then I got to start doing serpentines(like making s's) walking forward and backward in the pool. I finally got up to 20 minute sessions. If you first start, make sure someone is there with you in case you need help. It's a tough workout. It is a safe way to strengthen the core when it has taken a hit like ours has. Then I started out walking small distances, first in house, then down my street, then jogging. I have over done it and had set backs at times but shake it off, rest and recover, then try again at a slower pace. I am running a race on Thanksgiving Day with my dog (1 & 1/2 miles)-I'll let you know how that goes. I am just dying to run (or jog) a 5K race but dont  want to try it too soon. Sorry to go on so long but I hoped to share with you so that I might could help. It's a miracle that I am even where I am today and I never would have believed it. In the beginning, I was so limited with walking around my house especially with all of my stairs - so many doggone stairs- I was basically confined to my couch and struggled to walk just to the kitchen! When do you start PT? Good luck! Just don't give up! 

I should start by saying thank you as always for getting back to me. Seriously. And never apologize for writing too much. Everything that you had to say was so helpful and I'll certainly have to push the PT aspect and see how that goes! We belong to a YMCA (I haven't been since August ) but they have a lovely pool, so perhaps one day soon I can give it a go? I'm not too sure if I'm there yet as I fear my legs would just give out, but that said, it would be a good workout for my arms!  So happy to hear all that you are able to do now. I hope and pray I follow in your footsteps!  I actually had my very best day so far yesterday. I managed to walk several times on my own (maybe 5 - 10 steps) and I could crawl a bit, too. (I know, that sounds funny, but several weeks ago I tried to crawl so I could play with the little ones and simply couldn't do it -- so nice to know I can crawl a bit now. And it must be good exercise, right?  )  That said, my legs were in terrible pain last night and I am definitely a lot worse today -- pain, feel wobbly and shaky all over and subsequently very depressed.  It sounds like this is how it would go for you, too? I mean days where you pushed it and saw improvement followed by set backs? Did you find that on your bad days, all of you felt bad?  That seems to be the trend with me.  I try to keep telling myself that they have not gone back to zero (as they used to) and just to rest them, but I'm always so tempted to make them work just to make myself feel better (way to risky, I know.)  On the good days, I finally feel like I will get better, but the bad days like today always get me down. Sigh. Oh well, time to count my many other Blessings! Oh, and thanks for the tip about the recumbent bike. I'll have to give that a go, too!

I think that your goal for Thanksgiving sounds terrific! What kind of dog do you have? We have the most wonderful white German Shepherd on the planet, but for some strange reason she will only go for a walk if I'm present, so needless to say she's getting decidedly pudgy these days!  My husband and children get her outside a lot of course, but still not the same thing.  

My dream for Thanksgiving would be to be able to walk to mailbox on my own. We live in a very hilly area however, so it might be a challenge (our drive is very steep.) Still, that will be a day when I would love to get the mail....oh, not that there would be any that day...Or maybe just be able to hobble around the house on my own? That would be amazing!

And I hear you about the stairs! We have stairs everywhere, too. I can slide down them, but getting up is tricky.  My  poor hubby has carried me up more times than I can say (then the children want a carry, too!)

Well, all the best as always and keep me posted on your run!

Melanie

Hi Melanie!

You need to keep going at it slowly but keep working at it.  Make sure when or if you do the pool, that the water is cool.  They told me to stay out of the hot tub because the warmth makes the symptoms worse.  I have found this to be true for me.  I think the cooler weather is helping but too cold is bad too.  The pool supports your body so it helps but you should definitely have someone with you.  It really made me feel normal to be able to walk so much better in the pool.  You may not be ready for it yet.  You can swirl your arms while you walk in the pool too and get an arm work out when you are ready.  

After I did anything it seemed my legs would hurt more, twitch more, and I would feel much more wobbly.  That's great that you did the steps and crawled!  I know how hard it is to do activities again no matter how small they seem.  Those are huge steps forward!  Don't get depressed though, you are improving.  I did have setbacks every time I did anything but that has gotten better and better for me.  So, I bet it will for you too! Just think of it like a bouncing ball.  The ball will bounce up (bad days) but it will keep bouncing lower and lower but it goes up then down.  I had to keep reminding myself of that.  I can remember the day I could whistle-seems dumb and insignificant but it wasn't for me.  Oh, and I shot some baskets at the gym when no one was around last week just to see if I could.  I did but boy were my arms tired later. I'll try it again though sometime soon.  I also went to my first movie in the theatre last month.  Before I could not have done that because I could not sit up that long.  

I have a black and tan coon hound who is getting ready to turn a year old.  I couldn't take her out much this summer but my daughter was home from college.  Thank goodness she could because my puppy has so much energy and will eat the house if she doesn't get to run.  I can remember my first trip to the mailbox.  I even felt strange when I finally did walk further down the street like I needed someone with me in case I could not get back.  It's been hard to learn where my limitations have been at different times but fortunately they are less now.

You will get better.  Celebrate the small triumphs but don't let the setbacks take you out.  They are temporary.  I think your body will respond like mine because of the past working out.  It seems to really help with recovery.  I can't wait to hear about your first trip back to the mailbox and hope you have lots of mail!  Keep your spirits up!! And feel free to ask about anything.  Before you know it, you will recognize your life again and actually forget the GBS more times than not.

I'll let you know how the run or slow jog goes! Happy early Thxsgiving!!

Thanks so much, Tarhealing! And a very early Happy Thanksgiving to you, too! I think I shall have to come back and reread your message on all of my tougher days.  I know that time and patience is of the essence, but it's just so darned difficult some days! No doubt I'll have more questions for you (sorry in advance!) but I look forward to hearing about your Thanksgiving run! Please keep me posted

Melanie

Good morning! So here I am with yet another question for you (sorry, that didn't take long ) I was just wondering how exactly your pain changed over the recovery process, if at all?  By that I mean, that originally my pain was mostly intense burning and an odd "buzzing" sensatioj in my legs that would be just brutal.  These days the burning has almost gone, but I have a lot of deep tissue pain and ligament pain, at times it's so deep it almost feels as if it's coming from my bones.  This may of course be my muscles complaining a bit, too! Did you pain change like this also? I'd like to think it's all part of the recovery process and that it's actually a good thing?

Anyway, I forgot to say that I love coon hounds! They are absolutely gorgeous dogs and so sweet and gentle, but super energetic ( as I'm sure you know!) Your pup will no doubt be thrilled to do a mini race with you....then onto the next one and the one after that!

As always, thank you so much for your encouragement and kind words...some days are just so difficult (although that said, it'd always busy with 5 children!) and everything that you said really do bolster my spirits! And congrats on the whistling! Maybe when you finish the race you can whistle a victory tune...

Hi Melanie!

No problem. My pain has changed throughout my recovery. When my problem first started I had numbness, tingling and that "buzzing" sensation in my legs. It literally kept me awake all night. That burning pain moved up my spine and caused tightness in my neck and shoulders that later began to ache. As my burning pain went away, I did get pain deep inside.  Is your pain confined to one area? My pain would jump around to different areas every few days or sometimes hours. Sometimes I would have deep pains internally like in the middle of my body where I had not had trouble.  I would kind of worry and wait and it would disappear.  Now I don't get that anymore.

I would also get pain in my back after standing too long once I was getting my strength back. My whole back would tighten up to compensate for the weakness from the prior nerve destruction. My entire back, neck and shoulders would hurt after standing for 4 or 5 hours. Then my back would hurt so bad when I layed down to sleep. I could not find any way to lay that didn't hurt. The PT worked to teach me how to relax and stretch my back and body so that I could get out of that pain cycle. I would stretch over this big yoga ball multiple times in a day. It has really worked for me. I am no longer on any anti-inflammatory or pain meds. I just dropped my PT down to once a week this week. I'm getting so much better. She gave me more exercises to strengthen my core. Ones that I could do at home. Seems simple but I'm pretty wobbly so it must be good for me. She has me doing something called "dead bug" exercises. I would not start anything like this too soon because it is a hard work out but might be good for later down the road. I just started doing them today with 1 pound weights on my ankles and holding 1 pound weights in my hands.  

And it sounds like you have your hands full with 5 children! More than me with the energetic coon hound! Hopefully she won't sprint at the beginning of the race and I can keep up. I have 2 kids in college and one wild puppy. Glad I can take her out now and visit my kids in school. Before, I could not make the ride sitting in a car. Now, I can drive myself.

You will get there. Just don't give up! Good days are on the way!! And feel free to ask me anything anytime. I don't mind at all!

Hi Melanie! So I have a question for you. Have you noticed any sensitivity just below the surface of your calves? One thing that I had that has not gone away is a sensitivity just below my knee cap that is in the front part of my calf.  I didn't pay much attention to it when I was suffering with pain and other bigger problems. It doesn't seem to affect my strength but the area of sensitivity seems to have increased since I have been running more and I hope it is not something I need to be concerned about. I asked my neurologist but he didn't know or seem too worried. I guess it's a small thing compared to where I had come from. I had it early on in one leg then that got better and now I have it in the other leg. Just wondered if you had encountered this strange nerve effect.

Hello Tarhealing!

Sorry that it took so long to respond, but for some reason I didn't get an email notification until just now...Anyway, when you say sensitivity, is it to the touch? I do know that I have many instances where my skin feels hot and cold all at the same time (strange feeling) but to be honest, the pain deep in my legs can be so bad, that I don't tend to notice much else. I imagine for you that after some nerve injury the small fiber nerves may still be healing and causing all kinds of sensations?  If it's moved, I tend to think that it's just part of the healing process? I'm not a doctor of course, but maybe?  

I saw my physiatrist on Weds. and she is now concerned that my calf pain may be blood clots (yikes!) so off for a doppler on Monday.  Of course, I'm all spun up and worried about that now!  Not to be a pest, but do remember calf pain right now your calf -- sort of in a straight line. I feel the need to massage my calves constantly as I "think" it's muscular pain?  Goodness, always so much to worry about!

Oh and another question for you  I think that my pain/ moving problems are descending down my legs....by that, I mean I feel that the worst areas are getting lower down my leg? Did this happen for you? I just wondered that if it initially spread up that now it's healing down? Does that make sense? My feet seem to be having a lot of trouble and just feel so odd when I try to walk. Oh well, I'll just keep at it!

Oh and my doc still wants to wait on the PT but thinks swimming might be great! Not too sure if I'm brave enough yet...but hopefully soon!

Here's to healing!

Melanie

Hello Tarhealing!  Hopefully it's a great Monday for you and you're escaping this cold weather. It's supposed to be -5F here tomorrow with the wind....brrr! Cold for this time of year!

Anyway, I hope you are still moving forward? Things here seem to be moving in the right direction (God willing) and I've managed to walk around the main floor in a loop a few times on my own! I still feel wobbly and quite light headed (did you get that, too?) and my legs hurt and burn a bit after use, but hopefully that's ok?  I was wondering, when you started to regain some function, did you get pain and burning, too? And I'm EXTREMELY stiff! Yikes. My legs, esp below the knees where I was the worst affected, are still pretty much bolt straight, so I look a bit funny when I walk. I don't know if that's all part of the healing process or just stiffness from lack of use?  Did you also have stiffness?

As I see some progress though, I feel as if my frustration is growing because I expect to see progress every day and of course that doesn't happen. I've worked them hard these last few days, so today they feel decidedly weak and wobbly. Ugh.  I'm just hoping that I don't go back to zero again.  Oh, and no DVT in my calves. Phew!  Well, that's probably enough questions for one day...

Hope things are well for you!

Melanie

Hi Melanie! I just got back from the gym and it's going great. I did sit ups without trouble for the first time and ran on the tread mill for 3 miles. I am seriously considering jogging a 5K on Saturday before my town's Christmas parade. This is a race I've done many times and love. I won't win anything but feel confident I can finish without hurting myself. I'll let you know. That's great about your walking around. My legs did hurt and burn especially below my knees. So did my back after standing-burning, pain, & stiffness-more with activity. I had lots of muscle twitches too but they are almost gone. The stretching really helped me with the stiffness, burning, and pain and still does. Even now, I slowly pedal on the recumbent bike without resistance to stretch out my legs and lower back both forward and backward for a few minutes each way-it's something my PT showed me. It really helps before I run on the treadmill.

Dont get discouraged when you get weakness after doing more because that's the way it worked for me. I never went back to zero again so I bet you will not either. Glad no DVT too! Watch the swimming, I tried but it was pretty strenuous on my back and my core seemed to take a real hit that I did not realize at the time. Not sure if it was from being out of commission for awhile or nerve damage as well. But the pool walking is great because the water supports you but don't do much because it takes a toll and doesn't feel like it when you are doing it until you get out and your legs are weak. If you do, make sure someone is there with you. Water is nice because it supports your body.

And that sensitivity is better in my calves, still there but better. My hands did go numb & tingly while I was driving the other morning when I had to go out early with my daughter and it was so cold outside. The PT told me that both extreme cold and hot weather might bring back some symptoms. Luckily, it went away after about 20 minutes of driving. I take it in stride now since I've been used to so many random strange symptoms that disappear. I'm just glad I'm getting better and back to my life. I am glad that you are making progress! Stay strong & positive!!

You did 3 miles on the treadmill?? Oh I'm sooooo jealous!! But good for you...yaaay! I miss working out so much, it's crazy. I've told my husband a 100 times already that I will never, ever take walking for granted ever again. It really does put a new perspective on everything. It's hard to imagine running 3 miles from where I sit now, but God willing soon enough! I must say I'm surprised at how quickly I'm losing muscle tone -- in my legs of course but also in my abs.  Hopefully I'll be doing crunches soon enough.

I'll have to try the recumbent bike for sure.  The stiffness is really quite incredible and I find that just flexing/pointing my feet helps (although that still sets my legs to burning.)  Bit by bit. Is that the sort of thing your PT would recommend to ease into things?  It's funny what you said about muscle twitches, too.  I've noticed those at night especially.  I mean, I know many people twitch as they fall asleep, but I seem to be doing it a whole lot more than I used to!

And yes, my back aches terribly, too.  Actually the worst is my neck and shoulders -- which has left me with a rotten headache! -- but I think it's because when I try to walk, I am tensing up so much everywhere without even knowing it. My arms do "go funny" from time to time -- weak and sort of numby (is that even a word??) -- but mostly during the night.  It used to terrify me, but I'm trying to roll with it now and not stress so much anymore. And a 5k? Wow! That's truly amazing! No doubt your pup will love to do it, too. Keep me posted if you manage it.  

And thanks as always for all of the positivity! This has been the most difficult, frustrating and frightening thing I have ever been through. One day, all going well, it will be a distant memory for both of us!

Melanie

You did 3 miles on the treadmill?? Oh I'm sooooo jealous!! But good for you...yaaay! I miss working out so much, it's crazy. I've told my husband a 100 times already that I will never, ever take walking for granted ever again. It really does put a new perspective on everything. It's hard to imagine running 3 miles from where I sit now, but God willing soon enough! I must say I'm surprised at how quickly I'm losing muscle tone -- in my legs of course but also in my abs.  Hopefully I'll be doing crunches soon enough.

I'll have to try the recumbent bike for sure.  The stiffness is really quite incredible and I find that just flexing/pointing my feet helps (although that still sets my legs to burning.)  Bit by bit. Is that the sort of thing your PT would recommend to ease into things?  It's funny what you said about muscle twitches, too.  I've noticed those at night especially.  I mean, I know many people twitch as they fall asleep, but I seem to be doing it a whole lot more than I used to!

And yes, my back aches terribly, too.  Actually the worst is my neck and shoulders -- which has left me with a rotten headache! -- but I think it's because when I try to walk, I am tensing up so much everywhere without even knowing it. My arms do "go funny" from time to time -- weak and sort of numby (is that even a word??) -- but mostly during the night.  It used to terrify me, but I'm trying to roll with it now and not stress so much anymore. And a 5k? Wow! That's truly amazing! No doubt your pup will love to do it, too. Keep me posted if you manage it.  

And thanks as always for all of the positivity! This has been the most difficult, frustrating and frightening thing I have ever been through. One day, all going well, it will be a distant memory for both of us!

Melanie

You will get there with the running. I was exactly where you were. I would have never believed that I would be where I am today after all of that. I lost my muscle tone too and I just did crunches for the first time. Be careful with those, they are hard on the back. My PT told me that I should consider adding the pool walking back into my workout routine. I think that I will to keep strengthening my core although I really just want to run. Guess I don't want to overdo it and backslide. My neck and shoulders were also so stiff and it caused my head to hurt too. My PT said that my dura was tightening up and it would affect my lower back up to my shoulders and neck then to my head. She had me buy a large yoga ball and hug it and rock side & side and back & forth. It helped make my back feel so much better. She also had me sit on it and do small rocking side to side and back & forth while I would watch tv. This is an easy way to strengthen your core without doing agressive activity. She said that you have to retrain your body not to tighten up when it gets tired with this from the damage so that it won't get into a pain cycle. You just do easy stretches.

It's so good that you are rolling with the weird feelings. That has helped me relax more which in turn I think has helped me get better faster. I was so afraid and frustrated too. But you are getting better. This thing is just so slow with recovery. Before you know it though, you'll get there. Just take it a little at a time and don't get too frustrated but keep slowly working at it and pat yourself on the back for your strides no matter how small they seem. They are the small steps that will lead to your recovery! I'm excited about the race and hope I don't cry when I cross the finish.

Well, if you don't cry, I might! Such a huge accomplishment! But I know how you feel. I think I'll cry when I manage to walk to the mailbox on my own. It's not that it's a long distance, but our driveway is quite steep and there is no way I could walk on any kind of incline yet.  Have you managed to get there? 

Thanks so much for the PT tips.  Your PT sounds great, by the way.  We actually have a yoga ball, so perhaps I can try some of the things you mentioned? The headache thing has become pretty awful as it's been about a week now  That said, I think I might be nursing a sinus headache,too!  I need to keep stretching and hopefully that will help!

Things on this end have been moving forward with faster momentum, which I hope and pray keeps up! It's amazing how far I;ve come in the last week, so I hope that trend continues!  I'm walking more around the house and getting up the stairs mostly on my own, but getting down them is still tricky.  I can't bend at all, as there seems to be weak and wobbly feeling behind my knees, but hopefully that will change.  I keep reminding myself of the progress as I feel as if I should be normal again and of course I still have a long way to go.  I may try driving this weekend...I'm a bit nervous because if I can't drive yet, I know I'll be depressed.  But here's to hoping it all goes well! My folks are here now to help (up from NC as a matter fo fact -- they just retired down there last month!) which is great. They say the see a huge amount of progress since their last visit, so that's great to hear. Let me know how that race goes! I'll be cheering for you up here in PA!

Did you manage to race? I'm not too sure if it was for this weekend, but I cheering loudly for you up here in PA.

I just had a question for you....how did you manage emotionally to cope with the bad days after you had had good ones? I know you mentioned that when you went back to work, it would take days to recover again.  Did you ever just get so down and depressed?  For the most part, I have made some major headway this week (yaaay!!) with more and more walking every day.  I was really beginning to feel and believe that this was going to completely resolve in my heart and then today hit.  I've certianly been pushing myself a lot these past few days, but today I feel as if my legs have gone backwards again (very hard to walk at all) and boy do they hurt!! An awful deep, achy pain from the knees down in both legs...it was so bad that it kept me awake most of last night.  I'm trying to tell myself that's it's just because I pushed myself a lot lately,  but after several days of making huge strides forward, going backwards again is just so darn frustraing and depressing....sigh...I think I'll go back and reread your posts, as that always seems to help

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do for myself but I had worked up to the distance so I knew it was something I could do just maybe should have been more conservative. I usually get caught up in a race. It's just my way even if it's not the smartest way. It was my life before and I thought that I would never have that experience again so I was happy to feel it again even with my limitations.

And I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time like mine so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. I am thankful that we are still in the game (or race)! Can't wait to hear about the mailbox but take your time!

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do for myself but I had worked up to the distance so I knew it was something I could do just maybe should have been more conservative. I usually get caught up in a race. It's just my way even if it's not the smartest way. It was my life before and I thought that I would never have that experience again so I was happy to feel it again even with my limitations.

And I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time like mine so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. I am thankful that we are still in the game (or race)! Can't wait to hear about the mailbox but take your time!

Hi Melanie!

Your cheers must have reached me because I finished the race yesterday! I did tear up when I saw the finish line but people were high fiving me when I crossed the finish so I kept it together. I actually ran much faster than I thought or probably should have. My legs did hurt some last night and are twitching like crazy but not as strong or as bad as before so I think they will be ok. It was just something I had to do if I could.

I did feel so down and depressed when I would make headway then backslide. I think it's because I wanted to feel like my normal self again so badly. It felt so good when I could do anything that resembled what I could do before then I would hate when it was overpowered again by the whole GBS thing. I wanted to keep progressing and it felt like I was regressing just when I was getting used to feeling a little good. That's the way it worked for me though. It was weeks of feeling better, doing more, experiencing set backs, feeling down, but all the while I had to remember that my rheumatogist said that the ball would bounce up but never as high as originally. That was true for me and still is at times. I had to accept that this is how this thing tends to work and nerve regeneration takes awhile. It is so frustrating but you are improving. Just don't forget it. Before my son came home from college after I was feeling better, I vacuumed my whole house. The next day I could hardly get up. I had really overdone it because all of my weird leg symptoms were flaring up for several days. My PT told me that I should have only done a room or two and spread it out over a longer period of days. You don't really think of that when you start feeling better.

I'm right there with you so don't feel you are alone. I understand the frustration with setbacks. Good news is that I think your set backs will get smaller and smaller with time so keep up the hope. And give yourself time to rest but keep working to regain your strength when you feel better so you will be able to do more and more. Hope you feel better for Thanksgiving. Glad we are still in the game (or race)! Can't wait to hear about the mailbox!

You finished the race?!! Yaaaaayyy!!!! Whoo-hoo! HUGE congratulations from up here!!  Wow, that really is something. Way to go! I hope that your legs are not too bad today?  I'm sure they'll feel a little beaten up, but remember that can happen at the best of times after a good long run!

Thanks as always for all of your support. It truly means so very much. I think one thing that is so difficult for me is that I never actaully got an official diagnosis. Like you, I think they did the spinal tap far too soon and the nerve conduction test too late (it was 2 months in!)  I'll be at the three month mark on the 26th (so Weds?) but I think you are right. I had a bad day yesterday, but that said, I still managed a few loops walking around the house and even managed to walk up the stairs a few times (going down in much harder!), so God willing that ball is indeed bouncing less and less. I've been better today and already managed about 5 loops around the main floor on my own. It's funny how I celebrate these little things...I just have to try not to focus on my "normal" as that always gets me down and just seems so far away.  Oh well, any progress is great, right?  My husband loves to run and actually went for  a run yesterday. I was so happy that he could get out and enjoy some downtime (plus it was a lovely mild day here), but part of me just wanted to cry. 

I do keep eyeing that mailbox however! Did you take you a long time to conquer inclines?  That's the part that makes me nervous. If  it were flat, i think I would attempt it, but that steep hill makes my legs hurt just looking at it! One day though...

Here's wishing you a marvelous Thanksgiving! Are you still planning that run? I think it will be a piece of well deserved cake!

All the best, Melanie

 

Thanks! And I am still planning the short puppy run on Thanksgivng Day It is frustrating not to get the official diagnosis. But you know what it is if the symptoms fit and it follows the same recovery pattern.  I honestly think that there is much more for those in the medical field to learn about both "mild" and more severe GBS.

I am glad that you are doing so much better! I think that you will find your recovery speeding up now. It felt so strange the first time I walked outside by myself. I even remember when I walked to the end of my cul de sac. I didn't want to walk too far in case I could not make it back. When I first tried to jog, I moved so slow and didn't go very far. And it was so weird the first time that I tried to jog up a hill. My feet were barely moving. It did take me awhile but I just kept trying. Don't give up, just keep giving yourself time and stay positive! You will be running with him before you know it. The first time I tried to run, it was for 2 and 1/2 minutes and I was beat after that. Celebrate your successes no matter how small they seem. You will get there!

Thanks so much, Tarhealing! I just saw this as again there was no notification in my email...I just jumped on to reread some of your messages as today is a bit of a tough one.

First of all, I hope that you had a wonderful Thanksgiving!! Ours was lovely and it's been esp. great to have my husband home for a few extra days. The poor guy is exhausted!

I was doing fantastically well! The progress over the past 10 days was truly incredible (until yesterday, but more on that.) I've been mostly walking around the house on my own, going up stairs and sometimes down and yesterday I walked into the YMCA to see my 4 year olds swim lesson...a long walk through the Y, the locker rooms and around the pool. All by myself and then back again!!  I was so excited....but then yesterday afternoon I got up to make myself a cup of tea and Boom! my Legs sort of "went" again.  I made it to the couch and they just started burning, but thankfully only badly for 30 mins or so.  I keep telling myself it's just because I had really been pushing it for a week or so and when they were a bit wobbly yesterday I just ignored it and pushed through.  I'm not  back to zero, but how many days (or weeks -- ugh) back I am, I'm not too sure.  I still walked up the stairs this morning and a few more steps here and there, but it's not easy and my legs burn.  SOOOOOO depressing.  I'm just going to rest today and hope tomorrow is better.  I'm just so impatient!!

And yes, everything about my recovery seems to be GBS, right? I mean, even the onset was classic GBS so I keep telling my anxiety that that is what it is.  Perhaps I should see another neuro again? Although my physiatrist thinks the exam will be normal (as it is with her) and they won't have any answers....My arms have been very odd feeling, too, esp at night...heavy, weak, sometimes pins and needles, but I realize it may all by anxiety and tension related as I realize I am tensing up all of the time! Deep breaths!

Phew...well, sorry to unload on you (again ) It's just so wonderful to "talk" to someone who understands.  Oh, when you went backwards, would it happen out of the blue? Or was it usually the next day you would pay for it? Just wondering.

And how was your Thanksgiving run?  I'll bet the pup smiled the whole way!

All the best,

Melanie

Hi Melanie!

Glad to hear that you had a nice Thanksgiving. I survived my race. It started raining during the race and my dog sprinted from the start. I was afraid that I might slide in the leaves but I didn't. My hands were so tired from holding the leash. I could definitely tell a difference. She didn't quit pulling until the last half mile. She was like a ski tow rope! My legs were especially tired and have been for the last 4 days but everything was ok. I have been taking it easy since. My calves have been twitching like crazy but it's not as strong as before.

I am so glad that you have been able to do more. You even went to the Y and walked so far. That was huge! That definitely would happen to me after I started to do more. I would have the burning and feel wobbly too. My Neurologist said that the burning is nerve regeneration. I was worried because I could not tell the difference between nerve destruction and nerve regeneration but you have to remember that your nerves took a big hit from this along with your muscles and in turn your strength. You have come so far! I thought it was so hard to get a taste of rejoining my "normal" life just to backslide again into my disabled self. It was depressing and I still do it now but the backslide isn't noticeble because it doesn't hit me so hard. I think that it does sound like GBS because you are getting better. If you weren't, you would not be able to do more. I think your anxiety will get better, as you keep getting better. I think that you just have to accept that you suffered a pretty traumatic event and it will take your body time to heal from that. I didn't run for a long while and when I first did, it was sad and I did break down a few times. I actually bought a yoga tape to try to relax at home and start doing a little more and it was too hard for me. That's when I just selected what I could do and let it go with what I had trouble with. I think that's what you have to do. 

My anxiety was out the roof most of the time and I really had to work on it and trust that I could make it through this. I accepted weird feelings especially after I had done more activity and just rode through it. I would have checked it out but it always cleared up after a couple of days. I still do have weird sensitivity in my calves now if I touch my skin but it doesn't seem to affect my strength and I've mentioned it to my doctor but he doesn't know or really care so I'm letting that go too as long as it just stays that way. I guess I might have some lingering damage and I can deal with that. Someone suggested I try a calf compression sleeve for races so guess what I asked Santa for? I'll let you know how it works.

And my set backs were usually because I over did something I guess though I do remember just having pins and needles sometimes out of the blue. I had them when I started to drive my daughter back to college and that wasn't even the hand I was gripping the wheel with and it was warm in the car. It actually got better as I continued driving so go figure. 

Keep your spirits up! You will get there!!

Hi Melanie!

Just wondered how you are doing? I've been running and working out more. The cold weather seems to make it harder on me though. It seems that after I do more activity now that it's colder I'm stiffer and sorer after I have been sitting and have to get up. Have you noticed this? Hope you are doing better!!

Hello!  I've been meaning to check in on you, too, but admittedly it was a bit of a rough week and I didn't want to seem too depressed or whiny. SO excited to hear that you are working out more and running, too.  As I sit here, it really gives me hope that maybe I'll get there again one day.  You know, I had read that the average recovery period period for GBS is about 7 months, so it seems you are on a great trajectory for that (way to go, you! Yaaay!) It's funny you mentioned the stiffness. I am VERY stiff in the morning in my legs and I just put it down to part of the process, but perhaps it's the cold weather here, too?  Sometimes it's so bad it feels as if my ligaments have shrunk and are pulling at my legs, but I try to do gently stretching which seems to help. Perhaps it's just our muscles regaining function again?  Of course, it may just be that you are working out now, which is great, and your body is just readjusting...I think the best part is that you're pushing it and there's very little back sliding...really great!

This week was pretty rotten for me, certainly emotionally. As I mentioned, my legs went backwards last week and I have been slowly pulling out of that..I'm not too sure if I'm back to where I was at my best, but pretty close now I hope?  There are just some days that are so DARN DIFFICULT. The neighbours across the street bought a puppy and they were out on their lawn playing. All I wanted to do was pop across the street and say hello and I was hit by the absurdity that I couldn't.  It seems ridiculous -- me who worked out all the time can't even cross the road (too steep for my legs and wheelchair.)  Then our 4 year old has been begging me to pick her up at pre-school with the other Mummys, but with all the steps, I just can't get in...it's just heartbreaking.  Sorry to sound so down, I don't mean to.  My arms also had a few AWFUL days which really freaked me out, but thankfully they seem better now.  I do have an appt. with a new Neuro on Friday, so I'm excited about that! Maybe something definitive for once? Heck, I'd take a "maybe" at this point in time!

Forgive me if this is going too far out on a limb, but if you feel comfortable enough, you can always email me at ______ (if you decided to do this, I'd then send you my "real" address)  No worries if you'd rather not!  

Other than that, I'm so happy to hear that you are doing well -- you've come so far since June!  Now, just to get ready for the holidays! Lots of internet shopping for me  Take care! Melanie

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service .

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

Shoot! I just sent you a long email, but it's being "moderated"...I'll check in soon and hope it goes through! All the best, M

Hi Melanie!

I am so sorry that you are having so much trouble right now. My legs are giving me more trouble right now but I am trying more activity. You should not get down though. I think that is how this recovery goes. I am glad you have an appointment on Friday. Make sure to write down your questions so you don't forget. Don't get down if you end up with a "maybe" though. I will keep my fingers crossed for you. I figured out how to send you a Private Message so check your inbox. You will get better. I think it's that ball on the down bounce. It happened to me and still does just lower. Maybe the Neurologist can direct you to someone in your area who can help you with stretching that might slowly help you regain your strength. I go to my PT today. She hasn't been able to see me in about 3 weeks since I ran those races and worked more so I know it will help. I will send you positive energy for recovery! Just take the slow baby steps and you will get there!

Tarhealing,

My name is Chris. Your posts really caught my attention because I am also from North Carolina. I am curenly living in Germany, but I will be back this summer. Our situation sounds very alike, and I was wondering if you could help me with what you did to recover. I started feeling symptoms about 7 days ago, and to this point still do not have a diagnosis. I took a spinal fluid test on day 5 of my symptoms, but nothing showed up. They ran nerve conduction tests, brain MRI's everything... it all came back negative. I injured my back in September and have suffered from back pain and legs weakness for the last 6 months. I had a microdiscectomy on L4/L5 3 1/2 weeks ago to fix things. about a week ago, the numbness and weakness in my legs became worse than had ever been before. The doctors initially thought the numbness and weakness in my legs was a result of the healing disc. But now that the numbness is in my arms, face, thighs, and trunk, the doctors are confused. Walking is becoming more and more difficult. The numbness in other body parts comes and goes, but the tingling, prickling sensations are pretty consistent. I was thinking of trying another spinal tap in 2 or 3 days... hoping GBS (or something treatable) is detected. What are your thoughts?

Hi Chris! I am so sorry that you are going through this in addition to your back surgery. Have you been able to see a Neurologist yet? How was your intial labwork? Be sure to get copies of your records and scans whenever you can for future doctors. All of my initial labs, MRI's, nerve conduction tests, and spinal tap were first interpreted as negative too but I found later that was not the case with everything. But I am so glad that I had those records from the beginning. It's helpful! My doctors were confused too. They were not familiar with GBS especially "milder" cases. And I'll just say that mine never felt mild but in comparison to other cases, I guess that it was. I don't know when or if another spinal tap will show. I only had one and had the spinal tap migraine. I ended up in the hospital when I was experiencing my lowest point. It sounds like yours went better than mine and that's good. I don't wish that migraine on anyone! I don't know how Germany is, but it takes months to get in with a Neurologist in NC where I live. I did get in with a Rheumatologist and he thought that I had GBS but he couldn't diagnose me or really treat me. He did draw some more detailed labs which also helped me later to rule out other things and point toward GBS. I guess in the beginning I got sent home a lot to flounder around with worsening symptoms while I waited for my next appointment. I went to the ER a few times but that never helped me. What really helped me was having someone massaging my face, arms, and legs frequently but not too aggresively. When I finally got my appointment with a Neurologist, he set me up with Physical Therapy. But at 7 days out, I don't think I could have even made it to Physical Therapy. I was struggling just to make it off the couch. I kept trying to walk though even if it was just to the next room and back. I know for a week or so I could not even climb the stairs. I never realized my house has so many stairs until then. The Physical Therapist also gave me stretches to do at home because my back and legs would get so tight. I can give you those if you'd like. Physical Therapy and massage is what helped me more than any medications. But keep a watch to make sure you don't treatment if things get more serious. I've met other people online who have needed more serious help. See if you can be referred to someone more experienced with GBS or GBS like conditions. And try not to get too anxious. That just complicates things. Let me know how it goes. I can tell you what helped the most with different stages of recovery. Best wishes to you!

My fiance was diagnosed on May 28 2015. He has a very severe case. He was rendered completely paralyzed. Ventilation, feeding tube, unable to swallow, talk, or breathe for 3 months. It's been 9 months and 4 days....he still has no wrist movement, and very slight finger movement. He can't bend his arms...although he can straighten them (Extension). He can move his legs somewhat but he can not kick his leg out at the knee. He has full control of his trunk including head and neck. He is Eating by mouth, talking, and breathing on his own. He says that he never lost any sensation and could always feel everything...he just couldn't make anything move. On one hand we are thankful that he has continuously progressed and hasnt had any set backs or reached a plateau... but his progression is soooo slow... we wonder how long will this take. When will he get his hands back? If he could use his hands he could be so much more independent at this point. This is extremely hard on us...I don't have any reliable help...I am so tired and this disease is starting to kick my ass too. We are trapped in a small apartment (not even close to handicap accessible). How do we achieve something that resembles normal. A modified normal....this is emotionally affecting me which in turn puts unneeded stress on him. I love him so much and will never leave him. I will always take care of him....I just want him to comply with modifying our life to make things a little easier for me to take care of him. He doesn't want to modify his life "handicap"...ie...he says the electric wheelchair makes him feel more handicap. He doesn't want to move into anything bigger because he wants to save money... in essence he doesn't want to change anything in our life because he feels like that is giving in to this disease. He thinks that doing these things means he's giving up. Can Someone help us....

Yvette, I am so sorry you both are having to go thru this.  Having gone thru the same things, I can say I know how you feel.  I was very angry, saying why is this happening to me.  I retired and 3 months later I end up in ICU for 4 months.  After realizing I couldn't change what had happened, I decided I was not going to let it take over my life.  I started setting goals for myself, and worked so hard to reach that goal, then moved on to the next one.  When I was paralyzed from the neck down, I would lay in bed trying to do crunches.  I would try to move any part of my body to the point it felt like I was moving.  I was sending signals to my brain.  I have been out of rehab 7 months and just have the pins and needles in my feet and tingling in my fingertips.  Doctors can't seem to come up with anything that works.  I would say try and set goals, look at where you were and the improvements you have made.  Try not read too much on the Internet.  If you haven't already, go to www.gbs-CIDP.org and ask for their literature and see if they have someone in your area you could get some support from.  I am a member of a ladies running group, and they played a big part in my recovery by keeping me positive.  When I first came home, i couldn't even talk about it without crying, I have gotten past that.  I also felt I needed to make a statement, so I got a heart tattooed on the inside of my wrist that stands for "HEART OF A MOTHER, SOUL OF A FIGHTER".  We are all fighters, don't forget that, and never give up.  You're making progress and that is what counts. It may take some of us a little longer, that's all.  I wish I was near, I would be happy to visit and keep encouraging the both of you.  I live in Denver, CO.  when I was in rehab, they brought in a 70 yr old man with GBS.  He is still there, his progress is slow but he is getting there.  I visit him often.  Positive attitude goes a long way. I hope some of this is helpful.  please let me know if you have any questions.  Hang in there.

Hi! So sorry that your fiance has been suffering so severely with this. I had a milder case in May 2014. I was lucky to receive treatment from a couple of Physical Therapists who had experience treating GBS patients. That may something to consider because I think it really made the difference with me. I understand his feelings. It's tough to have something change your life so abruptly and drastically. Everyone says you have to "accept your new normal." I know that life had changed for me but I didn't want to give up the fight to make it as close to my old normal as possible. I'm still fighting but I think I will always be able to tell. The Physical Therapist also gave me some type of putty to work with to regain the strength in my hands and fine motor skills back in my fingers. It was really helpful. If he hasn't found good PT, maybe he could check. Good luck to you guys and don't give up the fight or hope!

Yes I'm on month 3 I have lots bad days still. I take cabaoentune 300mg 4 times a day and it helps

Karen I’m really hoping you get this message as your experience is similar to mine. 

May I please ask a question and I’m thankful for any feedback or suggestions. Apologies for the long message but docs are at a loss right now and so I’m hoping those suffering / surviving or hopefully with changes thriving, may have suggestions. Mom

Not sure how to post here so forgive me if you see this twice. 

Around 8 weeks ago I suddenly became ill. It felt flu like (but no cold symptoms). I had debilitating fatigue and severe muscle aches. I just collapsed on the sofa and did my best to cope,thinking it was a virus (still may have been). I then started to have shooting nerve pain all over my body. On the Monday I felt a little better but in the Tuesday I had nerve or muscle pain in my *L* foot it was acute and very painful after a few hours I went to ER. My right foot started with a mild version of this. Two days later my *r* leg suddenly went (right leg) our from under me and for around 5 mins I was screaming it was like something exploded, excruciating. My poor son called an ambulance. For about a week I then had shooting nerve pains and severe muscle, then joint pains. Plus other neurological symptoms (jerking, twitching). Needed strong opioids to deal. I then moved on to Gabapentin. I’m still weak particularly on right side. Mri of brain ok, bloods so far normal, muscle and nerve test ok. No explanation how I can go from normal to not functioning well. At one point I couldn’t hold my cell or raise my arms due to weakness. I can now walk but have gone from fit and normal to barely making it around the block. Initially I could only walk a few steps Muscle and peripheral or possible small fiber nerve pain is still bad but less intense and my knee joints now pop/rub. I’m seeing neuro, rheumatoid and cardio docs and tests reveal nothing. 

How were you finally diagnosed? My neuro is awful and hates being questioned m (i am on wait list for another).

.