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Guillain-Barre Syndrome


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Comment from: Rocky, 55-64 Female (Patient) Published: February 06

I have a relapsing type of Guillain-Barre syndrome for many years which eluded diagnosis. I have been hospitalized in the past but prefer to stay home. My episodes are always preceded by a viral or bacterial infection and result in spreading muscle weakness, trouble swallowing, crazy blood pressure (BP), severe pain in the back, head and legs, and I have required up to a year of physical therapy for things like foot drop and peroneal nerve atrophy. Each flare leaves damage that can't be fixed, like 'asbestos hands' that don't feel pain, and autonomic neuropathy. I try to head off viruses with a Z-Pak. I'm sick now so we'll see if that works this time. Physical therapy is key, and crutches keep me working and moving. I can walk my dog backwards on crutches after two glasses of wine but most people do not find them as useful. They require building strength over months on them, and lots of persistence. I am 62 but intend to continue to develop my own coping strategies: I don’t love hospitals and doctors. Sometimes they make the heart rate and BP issues worse with overmedicating and a rigid regimen. I have a good cardiologist who gets the idea of self-monitoring, and responding to big fluctuations with an array of medications, hour by hour till success rather than overdoing it. In hospital I've had nurses wake me up for scheduled BP medications when it is 90/56. Ridiculous. That’s why I stay home if I can. If I couldn't breathe I'd go.

Comment from: Hope, 35-44 (Patient) Published: August 24

I was diagnosed with Guillain-Barre when I was 34. My lungs collapsed and I stopped breathing and had breathing tube and tracheostomy. I was paralyzed from the neck down and over the last 8 months I have been regaining my strength. It hasn’t been easy and if you lie around feeling sorry for yourself you’re just going to keep lying around. I want to get up and you have to want it; I do it for my kids and I want to be better for them! My heart breaks for those of you who get this more than once.

Comment from: Trying2smile, 45-54 Female (Patient) Published: May 01

I was diagnosed with Guillain-Barre syndrome (GBS) in 2016. I don't know how it happened. The disease has taken over my life; I am bed bound. I hate being this way. I have lost so much. I wish I knew how this disease started and what I can do to become more independent. I miss my independence. I feel so lost and cheated! I need to find out how I contracted this disease.


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