Recovery Timeline & Questions
AnonymousJuly 31, 2007 at 6:29 pm
Hello everyone! I posted here a month or so ago about being the nap queen, but have been a little frustrated lately. And I don’t know if reading the posts help or not. I am an RN, and was diagnosed with a mild case of GBS. I don’t really consider it mild, since it is me and I am having such trouble walking. My symptoms developed over a period of about 3 weeks from the left leg paralysis, then the right, numbness which spread to my torso and then my chest, my arms were then affected, my pulse was irregular, then spread to my throat (just numbness) and to the top of my head and stopped. Literally everything just stopped. The last symptom I had was back in April and it was a loss of proprioception, which is knowing where your limbs are. I had MRI’s and other tests which were all negative and didn’t get a spinal tap until the end of May. I also went to the ER twice asking to be admitted because I knew something was not right but they sent me home. I used to swim about 5 miles a week, very active and very healthy. I was depressed and frustrated at this point, but my protein was elevated and he said yes, it probably is GBS. But don’t worry because it goes away. I was probably the only patient who was excited to have a diagnosis after all of that. Well, we are entering August and I still have issues walking. I have a sensory ataxia which means I don’t have joint sensation so my walking is funny. I am in my second month of PT, I have improved my muscle strength quite a bit, but I never had IVIG or any treatment. He said it was too late to do that. I am really starting to worry that this is going to be permanent. And would just like to know what timelines to be looking for improvement. I am better. I would be lying if I said I wasn’t. But I walk VERY slow, and when it was bad it felt like I was a wobble head thing, those dolls that sit on your dashboard. It is not that bad now, but does it really just take a long, long time to go away? I promise to never tell my patients again to not worry, it goes away, because I have not had much fun these past months playing the waiting game:) I wish I had been more forceful about getting treatment. I had mentioned GBS in the beginning to the neurologist because of the ascending pattern, but I had my reflexes so he said it couldn’t be. Any thoughts or comments would be great. I have really tried to have a good attitude, my work has been great about giving me a light schedule, etc. But there are days when gremlins fill my mind and I think it will never get better. Thanks for allowing the whine!!!
AnonymousJuly 31, 2007 at 7:30 pm
you are not whinig, but even if you were, it is allowed here. few understand gbs as we gbsers do. although this is my opinion, i believe there are few mild gbs cases, certainly none on this board. just cuz you did not have a serious attack doesn’t mean the recovery time won’t be long & meaningful in a negative way. as long as you are getting better, ivig is too late. you should have been given it within 24 hours of Dx, as recommended by the neurological board. no one knows how long nor to what degree you will recover, but recover you will. gbs stand for Get Better Slowly. time is measured in months & years. the 2 yr limit to recover is a myth. i did not start to make my best recovery till month 26. you must recover from any pt/ot in 12 to 18 hours or it is too much & will slo recovery. never give up. never give in. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJuly 31, 2007 at 9:56 pm
Welcome back Gab,
I’m so glad you’re doing PT, it is definitely something that needs to be done and will definitely help you.
“Dont worry, it goes away” 😡 … I think its best I dont even comment on that remark, except to say, as calmly as possible … This doctor knows nothing about GBS, and, what absolute hogwash. As Gene said, it takes months and years with a real posibility of residuals.
Personally, I dont see any GBS cases as being mild ….. except maybe the distinction of being on a vent or not. This illness effects your whole life and can take ages and ages to recover from regardless of how ‘mild’ it is, and it definitely seems to have effected most of your body.
Just like Gene said, unfortunately IVIg is too late, as your ‘attack’ is over and you are slowly recovering. Just wanted to mention to you that in some articles regarding GBS, it does mention that strength returns, and often the patients muscle strength is wonderful, however, its the nerves that are the problem and how well signals etc are being recieved, or how well your stamina or fatigue levels are.
AnonymousJuly 31, 2007 at 9:58 pm
Get Better Slowly huh? OK that’s funny. Is 2 years really one of the suggested milestones? Geez, that seems like forever. I guess there are a couple of things I am being stubborn about. As soon as I could not use a cane, I left it at home. But my walk is so sloppy and exhausting, I think I might need it back. Also, I have resisted getting a handicapped sticker. My friend takes me grocery shopping but once in a while I will go by myself, and it’s a long walk in to the store. It is a matter of pride, but I figured it would be a lot better by now too. Well thanks for your email. I feel better knowing I am still early by GBS standards. Thanks again Gene…Gabe
AnonymousJuly 31, 2007 at 10:05 pm
I am glad you agree with the “mild” case. I was not on a vent, but I remember calling my sister when it got to my throat telling her where important papers were. My PCP, in the first week told me there was nothing wrong and did I want a pill? I almost committed a crime:)
I try to go back and think where I was and where I am now, and I know there is improvement. I don’t have as much arm weakness but still have fine motor issues. But overall, that is better. I was very athletic so am very aware of even small changes, like how my muscles are working/not working, etc. Actually figuring out the sensory ataxia helped me, because I understood what was going on. So, I will keep coming back here for support.
I did log on a while back but I started reading about residuals, and people years out still having issues and I don’t think I was ready to read that. My friend told me to come back here and suddenly it all looks very supportive:) Go figure! I think I need to accept myself as I am, and I am having a hard time doing that. But, things could be worse, so I’m doing good! Gabe
AnonymousJuly 31, 2007 at 10:09 pm
You know, I think the next time my neuro says it was a mild case I am going to ask him if I can give him just a mild case of quadraplegia. Not too bad, and of course you won’t need a vent. And it will take forever to go away. But it will go away…Course he might knock me out after that!
AnonymousJuly 31, 2007 at 10:19 pm
Its all so very frustrating, irritating, and unfortunately gets one really down a lot of the time. i hate saying this, BUT only because i dont like pushing meds, …. if you do really get depressed, please do something about it and ask your doctor for something, its so important for your recovery – please, please dont be to proud like so many of us, we learned the hard way:eek:
I remember the PT walking lessons once I was out of the hospital. My PT was on a mission to teach me how to walk properly again. Well …. I thought I could walk, if one calls that slapping one foot after the other walking. We spent hours upon frustrating hours walking up and down the passage in their facility, showing me how to put my one foot in front of the other and put my heel down first. Aaaah, those were the times….. NOT!
AnonymousJuly 31, 2007 at 10:55 pm
Gabe it really does not matter the degree you are recovering from it is that you are recovering. Think possitive and it really helps. Challenge yourself by thinking of things you can test yourself to do. If you find a tiny muscle that is not working….ask PT or OT to help you get that working correctly. Knowing how the body works and what yours was capible of doing before GBS is going to be a great assest in your recover. It will not make it quicker it will just make sure that you get help where you need it. When you are months and years out of rehab and you remember some of what they drilled into you and you catch yourself not taking a step the correct way or holding your hand up like a puppy paw like a stroke patient or grabbing a wall for support or walking with your head down and not looking up….a little voice will come into your head telling you…..watch that posture! Pick up those feet higher and take bigger steps.
Don’t throw out your cane you might need it years from now if you are tired. Bigger stores have those scooters…take advantage of them…..as far as the handicapped parking…..going into the store it is not bad….it is walking out after being exhausted and trying to get into your car….not having to walk very far is a blessing. Get one! Can not find a way to approach something possitively….come here for support…..we are hear to listen and learn too!
Humor is a great way to begin….if you can not laugh at yourself….we will! Just kidding….we will understand! Been there done that!
July 31, 2007 at 10:58 pm
Hi Gab 111,
My son Kevin is 10 y/o and was nine when he got gbs. He did pt, watched his friends play, was sad, depressed and didn’t really want to be “here” sometimes. I kept telling him it would get better, it didn’t seem like it for a while, they actually changed his dx to cidp and he had ivig every six weeks with the aseptic meningitis reaction every time. He did every treatment like a trooper each time knowing he would have to do it again and again. Anyway, we continued to question the dx and re-examined (now 11 months post initial symptoms) and the doc. agreed to repeat ncv and re-examined clinical presentation. Anyway, we all agree now that it is aidp (gbs) again. Long story short, it WILL get better, Kevin is better, when he pushed to hard, he set himself so far back, actually making us believe it was cidp. Try to rest, it REALLY is true, you have to rest. As we started resting, Kevin started increasing his endurance and decresing his residuals. The burning was subsiding, the zapping was subsiding, the headaches were subsiding and he is currently playing like a little boy is supposed to. The only issue we are still struggling with is sleeping, he cannot fall asleep!
Please stay positive! You will get better! I never thought Kevin would be a regular kid again BUT HE IS!!! YOu will get better too! Good luck to you and best wishes!
Dawn Kevies mom 😮
AnonymousAugust 1, 2007 at 6:09 am
Gab I can’t say more the others said it all.
I just got a temporarily handicap parking pass and when I need it I use it. I just got it the week before I got my first ever IVIG treatment. Also like Kit says going into the store is not bad is walking out when your tired is a different story. Or myself I would normally go to more then store in a day but now I think twice because of the tiredness and my energy levels. I will get ridiculed for it from some but I know I won’t abuse it and if it helps me get out more then staying couped up at home then all the better.
AnonymousAugust 1, 2007 at 9:09 am
Gosh guys, that was all very encouraging. I had to chuckle about the walking bit, looking down, touching the walls, etc. That is what we work on and the weeble walk thing too. Oh well! OK, so the plan is give this all a lot more time, keep doing what I am doing, rest, and smile! I think I can do all of that!
And I think I will see about the handicap sticker too. I know I won’t abuse it either, but if it will help me accomplish more on my own, then I guess it’s not a big deal. Thank you very much everyone! I don’t know what was wrong with me when I looked at this board before, except that I wasn’t ready to read the posts. Have a great day!!! Gabe
AnonymousAugust 1, 2007 at 12:15 pm
My preteen daughter was dx with ‘mild gbs’ in early Feb 07. Because we were assured it was ‘mild’ and that it would all ‘go away soon’–we did not push super-hard for ivig. The neuro talked us out of it when we did push, after she wasn’t improving 2-3 weeks in, said the side effects were horrible, etc. I have to believe HE believed that my daughter would be better quickly, but he was unfortunately very wrong. It is now August and though so much better in so many ways, she is NOT recovered. She was primarily affected in her lower limbs (though there was upper body weakness, it was just never severe). Also, she had severe fatigue for the first 3.5 months.
The fatigue has gotten progressively better. Now, 6 months out, she is 85% normal, energy wise, UNLESS she overexerts and/or is out in the heat and/or doesn’t get enough sleep. Then her mobility suffers and she is just depleted until she rests.
Because she never got any treatment either, what maybe was a ‘milder’ case of GBS is taking a really long time to get over. I am trying to be patient and focus on her many, many improvements. She is using crutches now for short distances. Still in wheelchair for any long distances. Balance, stamina and that sense of where her legs are in space are still off. She’s working hard, but overwork just sets her back so we have to be careful and pace things.
So, you are not alone in a long recovery. Despite what many docs say, you don’t get it all back right away. It takes time and everyone is different.
Sorry to go on so long!!
AnonymousAugust 1, 2007 at 6:58 pm
Checkout the thread from wheelchairDan on Informational video. There are several studies in that thread I found very helpful that give stats on long term prognosis for GBS. I’m 7 months out and my NCV’s last week came back improved(not normal) except for one nerve in my right leg. I work but not full time. I walk normally in morning and worsen in pm secondary to fatigue. If I really push myself several days in a role my right foot drags. I used to jog 1 mile a day, water ski, barrel race(horse), garden. I really understand! Now I work and that pretty much sucks up all my resources. I have given up all the above. But, I am getting better slowly. My case was similiar except I did recieve ivig but late. I didn’t have a vent but was basically paralysed all over and face was involved.Maybe this helps understand timeline. But, we all have different recovery timetables and full recovery is not always there. I have learned many/most live with significant residuals. Mostly weakness. I hope you continue to improve and do well. It sounds like you are doing well to be so early out from GBS. Unlike many neuro disease’s there is much hope for this one. Dr. Shawn
AnonymousAugust 2, 2007 at 3:11 pm
Cincymom, thank you for your reply too. Actually, I have to agree with what one of the other folks said about “mild”. I don’t consider any of this mild as I am sure you don’t either. And I was not given the IVIG either which in hindsight is frustrating, but there is not much I can do. So your daughter is just about a month and half ahead of me so that is hopeful. I have improved energywise to a point. Right now I need a nap, and took one after PT today. But, it is better than before. So thank you again. It helps just to know where others are and what to expect. Gabe
AnonymousAugust 2, 2007 at 3:22 pm
Dr. Shawn, thank you for your reply too. Actually I had read one of your posts about your practice and what to do workwise. I am an RN but also work in Real Estate. My nursing position is home care, which is good and bad, because I can’t control my environment. I told my office once I was ready to work, that as long as they didn’t mind my handicap, my brain was fine to work. And that was sort of true. I found I made a lot of typo mistakes for some reason. Plus I was exhausted which didn’t help.
Right before I got sick I was reading a book on simplifying my life. It was very enlightening, not turning me into a flower child or anything, but I couldn’t work either, and my real estate suffered the most. I lost several listings because they felt I wouldn’t be able to keep up. And in fact lost one yesterday. I have become a nicer and happier person because of all of this. I realized early on, once I realized I wasn’t dying, that it could always be worse, I had a lot of friends who cared deeply, and if I lost money, or my job, things have a way of working out in the end. I am probably going to sell my house because I can’t do what needs to be done as far as maintenance. I can get something smaller, cheaper and that way if I am only working a little bit, or god forbid something else happens, I can just take it in stride. I kind of feel the same way about your practice. If it is in your partners minds that either you work a full load or not at all, is that a group you want to work with long term? I obviously don’t know them, but from my own standpoint, if I had to cover for someone, or help them out for a while as they recuperate, I would be honored to do so. I think as a society we are very concerned about a bottom line, and it’s not worth it. I know I am an excellent nurse, and I am sure you are an excellent doctor. Define what you want your new post GBS life to look like down the road. That’s kind of the point I am at now. Gabe
AnonymousAugust 2, 2007 at 10:41 pm
Gabe, I totally agree with your advise. I have been forced to simplify and it has brought unexpected blessings(ie more time with my children). My partners where really good at first but their continued loss of money has put a strain on our relationship. I look so “normal” so they pretty much said it was time for me to carry my load. I really can’t blame them. I’m so sorry you had to sell your house. And, I’m sorry you are loosing sales because of your disibility. It is sooo hard to accept that I now am not as able /capable and it is a big kick to my ego that I’m not able to carry my load. Thank you for your support! It is so good to here from fellow GBSers. Shawn
AnonymousAugust 2, 2007 at 10:45 pm
Oh and about leaving my practice- I’m pretty much unemployable. I did have another offer but it was awful. No employment aggreement just pay me by the hour. And the hourly wage that was offered was insulting. I’m hanging in there and hopefully I will meet my overhead this month. Shawn
AnonymousAugust 3, 2007 at 11:52 am
You will get better! It may occur a little slower than you desire, but there is no schedule for GBS recovery. Stay positive and count all those little blessings everyday. At the end of the week, they all add up to progress! I find that keeping a journal really helps. On the days when you are really frustrated, you can look back in the journal and see progress.
AnonymousAugust 4, 2007 at 7:28 am
Everybody’s rate of recovery is different. When I first got sick back in April, I swore that I would get better and be back to work by the end of June. I tried to remain positive, and yes I had my moments. Well thank goodness for my husband, brother in law, and my pt and ot. By week 6 I was walking on my own and feeling better. I went back to work June 25th, after 2 months of GBS and still feeling great!!!!! I listen to my body and rest when I can. I have off Friday’s so thats my day just to relax!!!
AnonymousAugust 4, 2007 at 4:56 pm
I kind of wish I had kept a journal because I think it would be easier to go back and look where I was and where I am now. I kind of had a set back on Thursday though. Before I forget Tracy415, are you better to the point you can walk normal? Just curious… OK Thursday I went to PT and asked if we could try something with my quads since we hadn’t done anything over the past couple of months. Well, I did a few reps on a machine, and tried to squat down holding on to the parallel bars and basically that was it. It was just a couple of things to see what I could do but my legs just felt worn out after that. Things got worse though. I left PT and was walking to my car and my legs were just jello. It took me forever to get there. I figured by Friday they would be better. I went to PT and couldn’t do anything and was sent home. Today is Saturday and I am having to walk lock kneed, otherwise my legs give out. I am hoping this passes and I think I read where someone else overdid it and had to take a break for a few days. Soooo, we are watching movies tonight and probably all day tomorrow too:)
Again everyone that has responded, it is sooooo very helpful for me to see when you had your onset and where you are now. And I know everyone is different but it at least gives me an idea if I am normal/abnormal/return to sender:) Gabe
AnonymousAugust 4, 2007 at 5:04 pm
Actually, I am sad things have changed, but not really sorry. I am also a single mom of three boys, so this all kind of scared me. But it has made me a nicer person and I was pretty darn nice before. Selling my house is just a thing, it doesn’t define me. And if I feel less pressure financially, then that is a good thing. The properties/sales I have lost, it is truly my clients loss, not mine. My real estate clients have also been absolutely wonderful and have told me some very nice things about how much I have done for them over the years and to please let them do something for me. Several even went into specifics of things I had done and forgot about, but they still think about them today. So as down as I have been, and cranky, etc., it has also brought out some very nice and peaceful qualities. Take care..Gabe
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