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Has anyone really gotten over CIDP?

Autoimmune Diseases | Last Active: 1 day ago | Replies (49)
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@kgitti

And let me add a bit more info. I know it is still active as I take an energy dive and loss of sensation and control in my extremities (sometimes huge like today) before the weekly infusions. I never had nerve pain, thank god, but the secondary classification I tested positive for was Acute Motor Sensory Axonal Neuropathy.
I am on Hizentra which evens the lows out better than the by weekly IVIG did.

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Replies to "And let me add a bit more info. I know it is still active as I..."
dlydailyhope | @dlydailyhope | Apr 4 7:26am

@kgitti
How were you diagnosed with CIDP? Did they confirm with a spinal tap? I am seeing a new neurologist end of April and will ask for EMG/nerve conduction testing, brain MRI, etc. I have read that a spinal tap is needed to confirm CIDP. My arms/hands/legs/feet and hips are so weak and it is hard to stand, walk, sit for very long. I also have balance issues and dizziness plus vision issues and confusion/memory/concentration issues.

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