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What is the biggest challenge you face when living with CIDP?
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Sonicbear
Sonicbear
Last activity on 08/08/2024 at 14:39
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13 comments posted | 4 in the Chronic inflammatory demyelinating polyneuropathy Forum
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Clueless medical practitioners! Now I'm told it's not CIDP, but Myelomalacia as a result of some past trauma. It's funny how all this started following a misplaced vax needle for pneumonia in 2012. NHS just ducking and diving trying to deflect responsibility for not taking it seriously way back then. Great swelling of the R arm and hand following the vax met with - 'not to worry, it will go down'. It didn't, and the swelling was joined by tingling and numbness gradually getting worse until a spine decompression op in 2017 relieved a trapped nerve in the Cervical area. Op- did not reduce or stop the advancement of the tingling, numbness, or lack of touch which has now spread to the rest of my body. My contention is that there are/were two things going on. Now, each and everyone in the medical fraternity trying to blame others for the present problems.
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Polina.K
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Polina.K
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Last activity on 11/08/2023 at 12:02
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89 comments posted | 1 in the Chronic inflammatory demyelinating polyneuropathy Forum
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Hello everyone, How are you today?
As you already know, a diagnosis of a rare disease can have a huge impact on one's life. It can bring new insights and information, but also many questions, challenges, frustrations and more.
So, what is the biggest challenge you face whilst living with CIDP? Is it a particular symptom? Is it the lack of information or awareness of your condition? How do you cope with these challenges?
@Jazzer @Solotaks @cessnatim @Sonicbear @Starry-eyed @JohnJ66 @RMROBINSON @CharaD @GaryHuxham
Feel free to share your stories and experiences here!
Participate in the new survey about Chronic inflammatory demyelinating polyneuropathy today!
Take care,
Polina from the Carenity team