AnonymousDecember 31, 2006 at 3:06 am
Early in December I had a flu shot. That night my arms started itching. The next morning my legs were itchy. Two days later my hands, knees and ankles were sore. Then my hands and feet were swollen. On about the fourth day I woke up to a numb right hand, but as soon as I got out of bed I could feel it again. Later that same day I had numbness and tingling in my legs. That was as bad as it got. My symptoms have slowly gotten better, although my hands are still a little swollen and I haven’t been able to get my rings off yet. I filed an adverse event report because I think I had an allergic reaction. Do you think I also had a mild case of GBS?
I have not been a fan of flu shots ever since my mom made us stand in line for hours to get the swine flu shot back in the 70s. The only reason I got one this year is because I have a four year old on chemo for leukemia. I made all my kids get flu shots. We’re not getting them again.
AnonymousDecember 31, 2006 at 9:17 am
I have never had the flu shot nor will i ever get it. My dad is in hospital on a vent and completely paralized. He was sick with flu like symptoms when he got the shot. Within 72 hours his life and ours has changed forever. We are six weeks today. It is a living hell and a nightmare that I pray will end soon. His story is under devestating prognosis on this site. I know they say the risk of getting GBS is very low with the flu shot, however my mind tells me this is the reason.
AnonymousDecember 31, 2006 at 4:50 pm
In all likelihood there are mild cases of GBS that never come to the attention of a neurologist. Cases of mild GBS reach a peak in a similar time to those with more severe disease. Treatment may be unnecessary in patients who are able to walk during the second week of illness. How ever I feel it can help stop potential progress.
AnonymousJanuary 3, 2007 at 6:13 pm
Sorry to disagree with you, but in my opinion, a mild case of GBS doesn’t mean it should go untreated.
I had a “mild” case that went undiagnosed for 3 months, and I was never treated. I was always able to walk, although barely. I ended up with damage to the nerve axons in many areas that have never recovered.
IVIG and PP are given as treatments because in the majority of cases, they stop the progress of the disease and prevent further damage to the nerves.
I would have gladly had either treatment, had I been given a choice at the time, just for the [B]chance[/B] to avoid or even just lessen the permanent damage to my body.
AnonymousJanuary 3, 2007 at 6:30 pm
Wow Suzanne barely being able to walk does not sound like a mild case to me. I’m sorry that you weren’t given treatment, I agree with you that preventing more damage is key.
Anneio (sp?) the thing that struck me about your symptoms was that some of them where not symetrical. I could be mistaken but I think one of the key signs of GBS is that you are affected on both sides of the body pretty much equally. I have heard that there are mild case that resolve themselves without ever being debilitating or needing medical attention but I don’t know any specifics. Maybe you should log all your symptoms and continue to be watchful or even talk to your doctor.
AnonymousJanuary 3, 2007 at 11:09 pm
I had a mild case of GBS when I had it the first time…20 years ago. I was able to walk but small, slow steps. If I had tried to run, I would have fallen over in three steps. There were no treatments given and I did not have any damage at all. I still taught 3 days a week so I was walking. If you think you had damage because of walking, then do you think that getting physical therapy (like walking too soon) does create permanent nerve damage? I am trying to figure out when PT should start. My intuition makes me question this. It would seem that walking on legs that are numb is not a good idea. DOes anyone else think that we should let the nerves heal before we put our weight on them?
AnonymousJanuary 4, 2007 at 11:09 pm
I guess a “mild” case is a relative term. After hearing how badly affected some others were, I know it wasn’t as bad as others here have had it.
While symetrical presentation is most common, and is what is often indicated in the textbooks, asymetrical problems can also be present with GBS.
My own symptoms were asymetrical. I had more weakness in my right hand and arm than my left. My left leg was more affected than my right. I had patchy areas of numb skin in various areas on both sides of my body. This was somewhat confusing to my first neurologists, who had never seen an acutal GBS patient before.
I didn’t have nerve damage because of walking too early, although I was able to do so. Nearly all of the time I was sick, I was in bed. The nerve damage was the result of the type of GBS I had, and the GBS being allowed to go unchecked. That is why I wish I had been given IVIG or PP – to stop the progress of the disease before it could do so much damage.
As far as PT goes, it’s important to have some PT very early in recovery. This should consist of mainly range of motion exercises at first. The purpose is to stretch the muscles, tendons, and ligaments, so they don’t shorten or atrophy, during periods of inactivity or paralysis. If this is not done, it can cause permanent damage, or make recovery and PT much more difficult later.
There are some exercises in PT that are designed to re-train the brain, as well as the body. For example, many of us suffered from balance and propriation problems. These can be improved with various types of PT exercises.
Among other things, I had severe problems with fine muscle control in my hands. I had occupational therapy for this while my hands were still damaged, and it helped my recovery tremendously, with no resulting damage.
With GBS, the nerves need rest in order to heal, while the muscles need exercise in order to stay healthy. This is a hard balance to strike.
I don’t know if it can cause permanent damage, but too [U]much[/U] exercise, too soon, can cause setbacks in recovery.
As a general rule, especially during recovery, you should never exercise to the point of exhaustion. Whatever exercise you do, your body should be able to recover from in 18 hours or less. Rest and exercise are equally important.
While I think you are, in general, right about listening to your body for cues, sometimes it is also necessary to do things that your body might not do naturally at the time, in favor of long term healing.
For example, when I learned to ski, I was stubborn. I’d been a good athlete all of my life, and most sports came naturally to me. In spite of advice to take lessons from a pro, I assumed that I could learn to ski by getting on the skiis, and letting my body and my brain figure it out.
Well, I did learn to ski that way, and it worked fine, until I wanted to do a little racing and difficult trails. Then, I found out that to ski [U]really[/U] well, I needed to un-learn some bad habits that I had picked up by teaching myself, instead of learning from a pro. Dropping the bad habits proved to be harder than learning it right the first time.
Recovery without PT is a little like this. You can save yourself some problems by doing it with a pro, before you learn bad habits, or do permanent damage.
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