Guillain-Barré Syndrome (GBS) Support Group
Guillain-Barré syndrome (GBS), is an acquired immune-mediated inflammatory disorder of the peripheral nervous system (i.e. not the brain or spinal cord). It is suggested that it is an autoimmune disease, in which the sufferer's immune system is triggered into damaging the nerve covering. Many cases developed in people who received the 1976 swine flu vaccine.
Dear fellow people, who have been diagnosed with GBS/CIDP,
I am trying to find out, which criteria can be used to distinguish between GBS and CIDP. Also, I have heard there are differences in how these 2 conditions are treated.
In brief my case:
Female, 33, diagnosis GBS after problems with walking and using my arms, no real loss of funcionality, loss of reflexes in legs, weakness, pain and the feeling of being made from rubber. This was 10 weeks ago. NCT inconclusive, because machine broken (!!!)
Treatment: IVIG, 5 days.
NCT after 10 days fine, symptoms gradually better.
It took me 2 months to get from being able to walk a few steps to slowsly walking for half an hour. Big improvement but still far from normal. Writing by hand max 10 lines, typing difficult.
After 7 weeks I had a light respiratory infection (maybe a mild flu, bit more than a cold though), which didnt go away. I also didnt sleep much and maybe exerted myself a bit. a few days later my symptoms got a lot worse again. NEarly as bad as before IVIG treatment.
I know, I have mild symptoms. I am however still worried as I had not recovered to working ability and am now much worse.
QUESTIONS:
Do you know how I can find out if its GBS or CIDP?
Have any of you experienced aggravations of symptoms when recovering from GBS and still fully recovered?
Have any of you heard of/experienced aggravations due to activated immune system (cold/flu etc) and/or lack of sleep/overexertion etc?
Do you have nay tipps for me? My neurologists seem to be at a loss when it comes to my symptoms and I dont feel like playing guinea pig for them....
I would write in more detail but typing is so difficult...
Please advise.
thank you so much for your support.
All the best to you, healthy mind and body and always a smile :)
Julie
I am trying to find out, which criteria can be used to distinguish between GBS and CIDP. Also, I have heard there are differences in how these 2 conditions are treated.
In brief my case:
Female, 33, diagnosis GBS after problems with walking and using my arms, no real loss of funcionality, loss of reflexes in legs, weakness, pain and the feeling of being made from rubber. This was 10 weeks ago. NCT inconclusive, because machine broken (!!!)
Treatment: IVIG, 5 days.
NCT after 10 days fine, symptoms gradually better.
It took me 2 months to get from being able to walk a few steps to slowsly walking for half an hour. Big improvement but still far from normal. Writing by hand max 10 lines, typing difficult.
After 7 weeks I had a light respiratory infection (maybe a mild flu, bit more than a cold though), which didnt go away. I also didnt sleep much and maybe exerted myself a bit. a few days later my symptoms got a lot worse again. NEarly as bad as before IVIG treatment.
I know, I have mild symptoms. I am however still worried as I had not recovered to working ability and am now much worse.
QUESTIONS:
Do you know how I can find out if its GBS or CIDP?
Have any of you experienced aggravations of symptoms when recovering from GBS and still fully recovered?
Have any of you heard of/experienced aggravations due to activated immune system (cold/flu etc) and/or lack of sleep/overexertion etc?
Do you have nay tipps for me? My neurologists seem to be at a loss when it comes to my symptoms and I dont feel like playing guinea pig for them....
I would write in more detail but typing is so difficult...
Please advise.
thank you so much for your support.
All the best to you, healthy mind and body and always a smile :)
Julie
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
"It is the gradual onset as well as the chronic nature of CIDP that differentiates it from GBS".
I had GBS and I can tell you, at least in my case, it pretty much hit me like a brick. I woke up one morning and had problems walking and had the numbness in my feet. So the question is how did your problems begin, quickly or gradually? From what I read the treatments are very different. So it's very important to know which one you have. IVIG treatments boost your immune system. Treatments for CIPD suppress your immune system,
It sounds to me like you might benefit from a second opinion. I wish you well.
Not sure if this is true of GB,
Good luck
Anyway, from my reading, I gather that CIDP only happens in a small percent of GBS patients (maybe 3-5%?) and I think that would show up on an NCT? But as you are still so early into the GBS journey, I imagine that it's just your body is still healing from the onslaught of it all and of course being sick doesn't hurt either! As someone mentioned CIDP also comes on slowly whereas GBS hits like a brick wall! Can I ask you a question? You said your NCT came back fine and yet they still said it was GBS? It may sound weird, but I'm hoping for that diagnosis just so I know what is wrong with me. I lost use of my legs on Aug 26th and still can barely walk (my legs are rubber from the knees down.) Not fun with 5 kids!! Did you find that during your recovery you sometimes went backwards? I have gotten to a point twice where I can walk 10 steps or so without my walker, but then I seem to "overdo" it and they shut right back down again. SO frustrating! Anyway, I hope that you are feeling much better as you read this! I'd love to hear how you are getting on. All the best!!