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Has anyone really gotten over CIDP?
Autoimmune Diseases | Last Active: Dec 20, 2025 | Replies (67)Comment receiving replies
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.
Replies to "And let me add a bit more info. I know it is still active as I..."
@kgitti
I have had c.i.d.p from when I was 19 years old. 2004 I was made to stand for hour's this could be 4-8 hour's shifts. I have been paralyzed from the waist down in my 20s also blind at the same time. I have foot drop. Mobility problems. I did learn to walk again and recover from both paralyzed and Mobility. Foot drop i use a splint. Other health problems on top of this. I have non epilepsy, vertigo, migraines. Pains in my hands most day's were my had jerks so I drop whatever was in my hand. I am now 40. I have had blackouts and dizzy spells. Always told I am fine by hospital/doctors. Apart from the nerve condition they can't do anythink about. I am from UK. So it's a real fight telling the government I am ill and can't always do day to day thing's.
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@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.