Still healing after nearly 3 years?
AnonymousFebruary 3, 2013 at 7:42 pm
Hi, My GBS came on suddenly in Feb. 2010, nearly three years ago now. I am almost completely back to normal with the exception of my left foot, and calf. There are still numb areas in my calf and bottom, heel, and left side of my left foot. Maybe one toe on my right foot has numbness. I still have ankle swelling and toe swelling if on my feet too long. The last few days I have noticed feeling coming back in my left heel and am excited that maybe there is still hope for more feeling to come back into my left foot. It does affect my balance ever so slightly to not feel my foot sometimes, but not too bad. I have been using a foot massager more often, several times a day while on the computer now and that seems to be helping somewhat. Anyone else have this long term tingling/numbness? I would say I’m about 95 percent back, which is most fortunate. I was on a vent and in rehab for nearly 3 months. I can do everything I want to do except maybe run, but I wasn’t a runner to begin with, so no loss. Just curious if there is still neurological healing after nearly three years or if I’m imagining this! LOL. I’m very grateful for my progress. Connie
AnonymousFebruary 3, 2013 at 8:59 pm
I am almost exactly same time out from onset as you. My progression was just short of needing vent. I still have some shortfalls with feet / ankle muscles and nerves but still feel progress is being made. Recently I began to feel feedback using brake petal while driving. Before this I really couldn’t feel petal on my foot, which is scary but got used to it. I work out weekly with a lot of focus on foot / ankle muscles and while results are slow I think progress is still being made. Keep believing your recovery is an on going effort and realize the effort you put in can still yield results. Good luck!
AnonymousFebruary 3, 2013 at 10:11 pm
Thanks for your note. I have heard that it takes about 3 years to recover, and what you don’t get in 3 years, you may not get. But then another GBS survivor told me that was false and that it can be 5 years or longer. So, I just wondered these last few days if I am still recovering (I think I am) and will be positive about it and PTL for it. Thank you! C
February 4, 2013 at 7:00 am
It’s hard to say, because at three years, the rate of improvement has slowed way down. I am about two and a quarter years past the lowest point. I believe I am still improving, but not enough in a month to notice. My residuals are similar — some numness, some hypersensitivity, and some pain in my lower lrgs and feet. My knees are still wobbly, and I feel they may never get back to normal. I don’t worry about it. I no longer use a cane, and don’t need AFOs or pain meds. Every improvement from here on is a gift.
AnonymousApril 23, 2013 at 1:06 am
Hello, I am mostly a lurker because I don’t feel worthy to post here. I feel bad to talk about my success when so many have it so much worse. I had rapid onset GBS in 2005, and that is when I joined this forum. I was in respiratory distress when the doctors told me “there is nothing we can do for you, you will likely never walk again”. I didn’t respond well to that, I literally fell out of bed trying to get to my feet. I was determined that if I never was going to walk again, I was going to fight like hell until I couldn’t. It was a very long time like many of you here can attest to before I began to see glimmers of normalcy. So, as an update, here is where I am today, nearly seven years later. I have no reflexes in my legs below my knees, I have little feeling in my calves and even less in my feet. I wear work boots most of the time because I find that I can walk better and there is less pain in my feet after. I put this out of my mind as much as possible, if I don’t think about it, I am fine. When I wear slippers around that house I have to walk really slow, going up or down stairs I am prone to trip. My shins have many scars to show the number of fails. Many don’t talk about the mental side, I am mostly ok, but I know I am not the same person I was, I don’t feel the same inside, I am more timid now then I ever was before, and I have difficulty at time remember how to spell a simple word, or thinking of a word or name. I have some swiss cheese memories as well. But for me the worst thing is that I have a partially paralyzed esophagus so I have to eat and drink slowly.
I am here today because my work told me that I “must get a flu shot to continue working here” and it scares the hell out of me. I have never had one, but I was told after GBS to never get one. Anyway, I hope more then you know that you all recover completely. Just know, what you believe, you can achieve.
April 23, 2013 at 2:00 am
Linc, you certainly belong here as much as anyone else, and your attitude about fighting to get your strength back is exactly the right approach. Makeing the best recovery you can requires some work and the will to do it.
Your concern about the influenza vaccine really belongs in the “vaccines” forum.
AnonymousApril 23, 2013 at 12:45 pm
As much as the medical community claims to know about the nervous system, there is still a lot that is not known. EVERYONE heals at a different rate and no one can tell you for 100% certainty that you will stop recovering after a set period of time. What they tell you is what is typical for populations that have been researched, but there are always outliers that recover faster or that take longer. What is known is that peripheral nerves recover at a VERY slow rate. If you think you are still having recovery…then I guess it is possible 🙂 Thanks for giving the rest of us hope through your recovery at such a protracted date.
April 24, 2013 at 11:32 pm
Linc, anyone who has been through all you have is “worthy to post here” don’t ever feel that way. i know it doesn’t seem it lately because there haven’t been many posts or people answering. This used to be an up and running forum with many members and posts. It shut down for a while and hasnt been so active since.
Don’t worry about posting under the” wrong “category—you will get used to navigating the site after doing it a while, I’m just glad to see you posting and sharing your experience, it’s helpful to read others stories. Lori
April 24, 2013 at 11:37 pm
oh…and i forgot to mention the main reason i answered you—–Most jobs that require their employees to get flu shots, also realize there is a certain population that do not have them due to egg allergies,religious beliefs, or as in your case advised not to by their physician due to other medical reasons. Maybe you could get a letter from your dr excusing you from the shot….why are they wanting flu shots in April for anyway??? aren’t they usually done in Oct/Nov. ? Lori
AnonymousApril 25, 2013 at 12:37 am
Hi Lori, thanks for the kind words. I travel quite a bit to customer locations for my work. Most of our customers are medical facilities and hospitals. It is the hospitals that are requiring that everyone who works there get a flu shot, so my company pushed down the mandate for all engineers that work with these customers.
I put my foot down, and I am hoping it pans out. My GBS isn’t the only reason that I don’t want a flu shot, but it is a serious condition for me. I have NEVER had a flu vaccine in my life, nor have I ever had the flu. I know that sounds crazy, but it is true. My grandmother, my mother, my sister and myself have never had the flu due to some weird natural immunity. Our family doctor said “At some point a strain will come along that you are not going to dismiss and you will likely get very sick.” My sister went into the military in 1982 and they required her to get a flu shot. She now gets the flu.
Anyway, that is the story.
April 25, 2013 at 4:08 am
Linc, unless your GBS began just after a flu shot, GBS is not a contraindication for the vaccine. The incidence of GBS is the same between those who have been vaccinated and those who have not.
As I wrote previously, you should start a new thread in the vaccine forum if you wish to discuss this topic.
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