I have been diagnosed w/ Guillian Barre “syndrome”. I’m not down w/ the “syndrome” theory but have been in the?2
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Question by heathersonline: I have been diagnosed w/ Guillian Barre “syndrome”. I’m not down w/ the “syndrome” theory but have been in the?
hospital since last Friday paralyzed from the knees down. There is nothing more they say the can do. Nerve conduction tests abnormal. Spinal tap did not confirm hyper protein as w/ Guillian. Leg muscles beginning to atrophy after 1 week. Cannot walk, cannot place my feet properly. Am in severe muscular pain not to mention the anesthesia for the extensive MRI and the spinal tap causing a huge unridable headache. I am crying my eyes out! What is with this is my 34th birthday month and suddenly I have an autoimmune disorder that is wasting my leg muscles and causing me to no longer walk? to be paralyzed? god help me. please.
God Bless You Pangolin; the only person w/ grace who has answered and seems to understand the devestation I am under~! Thank you, angel on earth w/ a kind heart.
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Answer by greengunge
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Guillian Barre is not known to be a long term syndrome. Peripheral nerves and muscles can recover. There are millions of worse conditions you could have…if you do in fact have this condition. I second what the first guy said.
Your headache can be fixed – it’s from the spinal tap, which left a hole in the sac of fluid under your spinal cord. Request a consult from anesthesia for a blood patch. (Your own blood is injected in the epidural space to plug the hole – effective 95% of the time – amazing results)
Also, you need to ask your physicians why your pain is not being adequately managed. Bother them until it’s taken care of. If you are in the hospital, ask for a PCA pump (it lets you give yourself doses of pain medication through an IV).
Not all patients with GB (or any other syndrome) will follow the textbook presentation of the disease, so if you don’t match up exactly with what you’ve read, it doesn’t mean you don’t have the syndrome.
It’s going to get worse before it gets better, but it WILL get better.
Prayers are with you – you’ll get through it.