Patients Chronic inflammatory demyelinating polyneuropathy

What is your CIDP story? Let's share!

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Courtney_J

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23/11/2021 at 16:25

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Courtney_J

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Last activity on 13/10/2022 at 16:47

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1,280 comments posted | 5 in the Chronic inflammatory demyelinating polyneuropathy Forum

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Hello everyone,

Welcome to the chronic inflammatory demyelinating polyneuropathy discussion group on Carenity! emoticon cute

This space is dedicated to you to share your questions, stories, fears, advice, and much more with other members!

As you know, the diagnosis of a chronic illness, especially if it's rare, can be a life-changing experience. So let's talk about it together!

What was your diagnosis experience like? How long did it take you to get your diagnosis? What symptoms did you have that made you feel like something was wrong? How are you doing today?

Feel free to share your story here!

Take care,
Courtney

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JohnJ66

23/03/2022 at 10:49

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Last activity on 23/03/2022 at 10:26

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5 comments posted | 5 in the Chronic inflammatory demyelinating polyneuropathy Forum

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@Courtney_J I don't know how it went for other people, but it was a disaster getting diagnosed. My GP kept trying to say that the tingling and fatigue was just because I'm getting on in age and aren't as active as I should be anymore and wouldn't order any tests. Then for a bit they thought it was Guillain Barre. Eventually after a lumbar puncture and a nerve test they decided it was CIDP.

What is your CIDP story? Let's share! https://www.carenity.co.uk/forum/chronic-inflammatory-demyelinating-polyneuropa/living-with-chronic-inflammatory-demyelinating-polyneuropathy/what-is-your-cidp-story-lets-share-4411 2022-03-23 10:49:48

BakerWill

15/07/2022 at 17:54

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Last activity on 04/01/2023 at 10:56

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1 comment posted | 1 in the Chronic inflammatory demyelinating polyneuropathy Forum

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It took forever for me to get diagnosed too @JohnJ66 . To be fair, I had never heard of CIDP before my diagnosis, so I guess it’s not obvious. Part of the reason it was challenging in my case is that my symptoms appear then disappear. My hands and feet are the most affected and tingle for a period of time, then it seems to get better. But then it keeps coming back. I usually get steroids but was wondering if anyone here gets plasma treatments? Thanks for your feedback. -Will

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LizziB

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22/07/2022 at 13:59

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LizziB

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Last activity on 02/04/2024 at 00:46

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280 comments posted | 2 in the Chronic inflammatory demyelinating polyneuropathy Forum

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Hi @BakerWill and @JohnJ66

Especially in the case of rare diseases, it is often hard to diagnose. It must be very hard to consistently go to doctors and get tests and have them not know what is wrong. Thanks for sharing.

Would any one else like to share their diagnosis story?

@Andrew010 @GaryHuxham @Soxandspot @DMH8472

Take care,

Lizzi

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What is your CIDP story? Let's share!

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