Find out how to let us know if you're concerned about another member's safety.
CIDP

jonno1971
Member Posts: 11 Listener
Hi last week I was diagnosed with CIDP I'm jon and I'm 47.
It's a bit tough! And very confused. Start IViG on monday. Any advice guys???
It's a bit tough! And very confused. Start IViG on monday. Any advice guys???
Comments
-
Hi @jonno1971 and welcome to the community! Would you mind telling us what CIDP is as I'm not familiar with itDisability Gamechanger - 2019
-
Hi. Sorry yes CIDP it is chronic inflammatory demyelanating polynuropathy. It's an autoimmune disease which attack the peripheral nerves.
-
Thank you for explaining
I've not heard of it before, but I can relate to how you feel, not knowing what to expect or do. I have a rare neurological condition, Transverse Myelitis and I was petrified when family and friends had never heard of it, it made me feel very isolated and confused.
It is tough coming to terms with a new illness, overwhelming too. Has your GP/consultant explained and answered any questions you may have? Could you explain what IViG stands for please?Disability Gamechanger - 2019 -
Thanks for your reply. Ivig is intravenous immunoglobulin . I start monday for 5 days of 4hrs.
-
I hope the week goes quickly for you, I used to have infusions every 6 months, 6 hours a day for 5 days. It did get very boring waiting, but the treatment really helped. I hope your treatment helps and if you would like to chat throughout the week, then we are always hereDisability Gamechanger - 2019
-
Hi @jonno1971 @ClaytonGirl was just asking yesterday if anyone else had CIDP or Guillain-Barre Syndrome. So you're not alone! Her post is under the Heading of 'Talk about Specific Conditions' if you click on 'All groups' at the side of this page, then scroll down to that, then you'll see there's a sub-heading 'Neurological Conditions;' her post is the top one under that.
Brightness
Categories
- 53.1K All Categories
- 10.4K Start here and say hello!
- 4.8K Coffee lounge
- 4K Disability rights and campaigning
- 1.5K Research and opportunities to get involved in
- 149 Community updates
- 12K Talk about your situation
- 1.8K Children, parents, and families
- 762 Work and employment
- 579 Education
- 1.1K Housing, transport, and independent living
- 1K Aids, adaptations, and equipment
- 278 Dating, sex, and relationships
- 264 Exercise and accessible facilities
- 21.2K Talk about money
- 2.1K Benefits and financial support
- 4.4K Employment and Support Allowance (ESA)
- 12.3K PIP, DLA, and AA
- 2.5K Universal Credit (UC)
- 4K Talk about your impairment
- 1.3K Cerebral palsy
- 676 Chronic pain and pain management
- 700 Rare, invisible, and undiagnosed conditions
- 752 Autism and neurodiversity
- 929 Mental health and wellbeing
- 298 Sensory impairments
Complete our feedback form and tell us how we can make the community better.