Average time for full recovery?
July 20, 2011 at 7:47 am
What has anyone ever heard about the average time for full recovery? Under 1 year? 1-2 years? more than 2? Any studies around?
July 21, 2011 at 10:07 am
hey Hedley, how goes it?
From what I have gathered, there is no average time, everybody’s different….supposedly 1 year is the average, but people have had recovery last 3 years….some say they feel healing even years after……my MD believes that 18 months is where healing tapers off and you are stuck with what you got, my hand therapist says B.S. to that
stay hopeful, I know it’s hard…have you tried massage therapy? I can’t afford it anymore, but I’m trying to get some more credits through insurance, definitely the most effective therapy I have had for pain management
July 23, 2011 at 8:21 pm
I’ve heard 6 months from medical professionals as the time where you get “the most” back. From others I’ve heard up to 3 years. From what I can determine I really don’t think any one knows…The way I look at is if you have the ability to move a certain part of you body you can start to gain function. Strength/dexterity may take a while but as long as you are working the areas that need improvement you WILL see improvement. I like to believe we are a constant work in progress.
July 25, 2011 at 8:07 am
Thanks for the answer guys. The GBS handbook on the illness says “6 months to two years or more” when it comes to recovery. I verified that with two neurologists as true. However, not everyone makes a full recovery. Maybe 80% if you push it. The rest are left with deficits (fiscal word seems strange) of some kind. I am approaching 2 1/2 years next month and have two dropped feet, wear braces and walk with a cane. But I got hit with this at 67 years old. I was on great shape when I got it. I’m not whining, but if I knew I was going to live forever, this would really **** me off. Thanks again guys, you’re the best.
July 27, 2011 at 9:23 pm
I am got this gift 9 months ago at 41 and I am still @#$#$# off. Getting better but if there is a positive it did make me appreciatee the little things a lot more.
AnonymousJuly 30, 2011 at 12:00 am
Hell if I know. I was diagnosed January 5, 2010. It took me 6 months just to be able to stand up. Once I hit that 6 month mark and was able to somewhat move again, then the process picked up a little. But here I am a year and a half into it and I still have problems. Little things like waking up with numb feet. Feet going numb when I do any kind of exercise or walk too long. Phantom pains. (Anyone else get those?) I have come to terms with that fact that it may always be like this though.
I wouldn’t listen to what doctors say is “normal.” From what I have learned from havinh GBS and having “abnormal” symptoms, I just don’t think they know enough about it yet.
July 31, 2011 at 8:03 am
Jessica…….you are walking w/out a cane which is good. And you do not have dropped feet or wear braces to hold them up. That is GOOD. Get off your feet when the numbness gets bad. Get into a lounge chair to elevate the legs level to the floor. A year from now you will be better than today. Not much is known about GBS. What they know collectively can fit in a thimble and that would still leave room for my braces. KEEP YOUR CHIN UP.
AnonymousAugust 1, 2011 at 12:21 am
I am enjoying a nice vacation in Manitoba where for the first time in at least 25 years, it is possible to be outside in the evening without being swarmed by mosquitoes. So anything is possible.
There may be an average period of recovery of the motor nerves for GBS sufferers which is less than 2 years, but for muscle recovery, I think that the average recovery for those who had severe GBS, the average recovery period must be several years. I had all my muscles completely waste away in 2007 and almost 4 years later I am still improving to get back to full recovery in my legs — and I have been exercising every day. I am very thankful for what recovery there has been, but I am still trying to improve the muscles a bit more to be able to play singles tennis again, like I used to. I am optimistic that it will happen, but I do appreciate how slow a process this can be!
AnonymousAugust 14, 2011 at 8:35 am
Making a prognosis about recovery is impossible. Recovery begins as suddenly and inexplicably as when GBS symptoms appear. The symptoms disappear gradually, but may take weeks, months or years to do so. The course of the disease varies for each patient. Recovery takes 3-6 months for most patients, and about two-thirds of them recover completely.
As numbness, tingling and pain disappears, strength returns to the affected areas of the body, in the opposite order of succession as when the symptoms appeared. This means that in most cases, the arms and legs will regain their strength before the legs do, while right-handed patients may experience that strength returns to their left hand before their right, and vice-versa.
AnonymousAugust 16, 2011 at 8:38 am
My DH’s neuro said that most of the recovery occurs within 6 months, but the usual recovery lasts 1-2 years with some patients seeing their own improvements over many years.
My own theory that it really depends on the nerve damage. E.g. my DH had moderate nerve damage according to his neuro and probably for this reason I don’t expect him to be ‘the same as before’ in the next two months when he reaches his 6-month anniversary of the GBS.
August 16, 2011 at 12:41 pm
[QUOTE=tnash]Making a prognosis about recovery is impossible. Recovery begins as suddenly and inexplicably as when GBS symptoms appear. The symptoms disappear gradually, but may take weeks, months or years to do so. The course of the disease varies for each patient. Recovery takes 3-6 months for most patients, and about two-thirds of them recover completely.
As numbness, tingling and pain disappears, strength returns to the affected areas of the body, in the opposite order of succession as when the symptoms appeared. This means that in most cases, the arms and legs will regain their strength before the legs do, while right-handed patients may experience that strength returns to their left hand before their right, and vice-versa.[/QUOTE]
I’m going to challenge the 3-6 months recovery, but not to be a pain in the bum
I am around 14 months and I am night and day different from where I was at 6 mths. As well, at the recent GBS conference I attended in Toronto, GBS patients who had recovered told me not to count out more in the coming years., I can even account for some hand recovery in the past 2 months.
Don’t give up!
AnonymousAugust 17, 2011 at 11:44 pm
Through out my recovery I kept repeating my Neuros words. That GBS was temporary along with the symptoms. The Walker and cane have long been kept away. I was able to wear my wedding ring again without my finger swelling up. (more than once my wife suggested making it into earrings). Now I only have symptoms in my feet, worse when I only get 2 hours sleep. (only did that the one time) Now my health advisor says I should start cardio exercise. I’m doing 20 minutes on a elliptic cycle and I hope to get it up to 40 minutes. Got to work of this gut.
Don’t give up…
AnonymousAugust 18, 2011 at 5:06 pm
Dear Fellow Recoverers! It’s a journey – just like life. I am in year 16 and still find unexpected changes, meaning improvements. Nothing is static – even in a stagnant pond! So much depends on nutrition. You do yourself a big favour with organic fruits and vegetables. And minerals play a huge part in health. Every time we eliminate a toxin, be it environment, diet, etc. the body has less to “fight against” so it frees up the energy to put into healing. So much more info abounds than docs have the time to research – that’s why it is up to each of us to be proactive in our own healing program. Remember – a doctor is only one of the guides in our lives!
When we lost our health insurance by moving to another state and I became more proactive for my self; I see my regular doc once a year for the update and to make sure I’m on a good path. Of course it really helps to have found a doc who believes in the research I do. With the rare lung disease I presented with in the early stages of GBS I “should have been dead 10+ years ago” according to medical science’s understanding.
I strongly believe in a Higher Power and the prayers of others.
Don’t ever give up but perhaps modify your expectations in the interim – nerve regeneration can be a long time or happen quickly. And of course, “we” don’t ever really know the extent of the damage to other parts of the body.
Remember that the nerves are the communication system for All body parts.
Here’s to your long-term recovery to health – quality not necessarily quantity:D Getting Better Slowly – GBS (thank you Gene – we miss you . . .)
AnonymousAugust 29, 2011 at 8:38 pm
From before my illness, I have been a vegan. Aka I don’t eat meat or a lot of the bad things (Sugar, Alcohol etc). Like Judi Z said about removing toxins from the body, meat, sugar and the rest take a lot to digest and eliminate. Having lighter vegetarian foods support the immune system and by digesting easier, allow your body more time and energy to heal.
After the ivig and pain meds are done, mainstream medicine is out of bullets. That is were alternative medicine takes over.
AnonymousAugust 30, 2011 at 2:29 pm
Hi everybody! Checking in again. Just had my three year anniversary. Woohoo! I went down on 8/3/08. Full ventilation – the works. But, I was back at work on 10/3/08. At that point I would say I was at 80%. I had a little blurred long distance vision. Signs on the freeway were annoying. And enough blurred vision to make reading not enjoyable. That lasted a couple of months. Same with having to think to blink. I also felt like I had cottage cheese or sand between my toes. That lasted a year at least. Then it moved onto just the slightest feeling of numbness on the top of my toes. I was messing around the other day and realized, hey, the numbness is gone in my toes! It was like, wow, when did that happen?! So things continue to improve albeit slowly. Today, I would say I am at 95%+ of where I was before I went down. I’m back to paddling outrigger canoes. In fact, I’m leaving tomorrow for Kona to compete in the Queen’s Race. So keep it up! What’s that song by the Beatles? “It’s getting better all the time”
September 4, 2011 at 11:33 pm
I would also challenge the 3-6 month recovery. I am almost 1 year post GBS at 3 months I could not..
-turn the ignition key on a car
-put away dishes with 1 hand
-effectively use a knife to cut food
-walk more than 1200 ft unassisted
-get up from the floor w/out grabbing something
-go up and down stairs at the house
-fill the car with gas
-Bench press 50 lbs
-Mow the lawn
-button shirts, or wear jeans
-+ much more
Now I am back to work full time all of things above have moved from the can’t to the can list. The wheel chair has been returned, and the walker is going on Craigs list for someone who needs it. I am very fortunate but 6 months from now I expect to move more items to the can list. The 3-6 month comment used to depress me when I hit 6 months but now I realize it’s just a number and like many other things with GBS they just don’t know. With hard work almost all things do get better. All I know is that I am well beyond the 6 month mark and continue to see improvement. It’s slow and sometimes I catch myself saying S#$* 30 days ago I tried this and could not do it..now I can. One must work and be patient. but in my opinion 6 months is BS.
April 7, 2017 at 8:08 pm
I was diagnosed back in January after a muscle biopsy. Started treatment Ivig 5 days. That 4 day my left arm started to go back to normal and within a week my muscle tremors almost completely stopped. Next week I start my 3rd round of Ivig. So far Just a few days before my treatments ,my legs get very weak . I realized that I took all the little things for granted. I’m not climbing up steps yet, however using forearm crutches still. I’m excited to see what next few weeks looks like. I’ll keep you informed!
March 23, 2018 at 12:37 pm
In early, almost my whole body was paralysed and I was coma for 5 days. 4 days after I wake up from coma, I gained back my motor function and sensory except my right leg(below knee). 2 weeks later I started my physiotherapy for 2 weeks then I could walk without using walking aid but still with the footdrop. Outer part of my right calf and my right foot totally numb(only small area of inner side of my foot still can feel normally) and I can’t move my right ankle at all. There is significant muscle loss on my right leg and calf muscle was very tense too. Almost after 8 months I could slightly move my ankle but only for plantar flexion not dorsi flexion and also gain back a little sense on outpart of my right calf. Now it’s almost 1 year for me I still having footdrop problem but the improvement I can tell is I could move my ankle slightly more than before and the sensory of my right calf not the ankle also gt little bit improve and the muscle is not so tense(I feel like left only 10% tense compared with before). The problems I have faced so far is just only I can’t run, jump and squat. I still able to go for weight training and I didn’t feel my strength got any differences compared with me before GBS(except my right leg). I was really frustrated and always asking my what if this is the best recover for me already(I believe that everyone here wish to be recover 100% like before getting GBS) until I read this forum. Thanks for everyone here who willing to share your experiences, it really did motivate people(at least me) to stay positive and strong. Things happen happened, we couldn’t change it so just be positive and patience. -Man believes in hope-
March 30, 2018 at 5:09 pm
I had GBS a very long time ago. My recovery was about 6 months. By then I was on a wilderness canoe trip in the Adirondacks. But full strength did not return until I started weight training. Now that I am 73, I had some odd feelings in my lower legs last week. All gone now.
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