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Patients Chronic inflammatory demyelinating polyneuropathy
How did you handle your CIDP diagnosis?
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JohnJ66
JohnJ66
Last activity on 23/03/2022 at 10:26
Joined in 2022
5 comments posted | 5 in the Chronic inflammatory demyelinating polyneuropathy Forum
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It was confusing and stressful from A to Z for me. To this day I'm not sure of what this disease is, where it came from and the way forward. There's not much information out there beyond the standard medical sites that all say the same thing.
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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I haven't actually been officially diagnosed with CIDP. Seems there were two problems - the first starting in the mid-1990s was eventually diagnosed as Stenosis in 2004. A successful Op eventually performed in 2017. The second, unverified by differentiating tests, seemingly overlapping the first - started mildly in 2012, and has progressed to the present chronic state. The progression of official diagnoses - without ANY tests (several CTs, MRIs & X-Ray) was Arthritis (mid-1990s); Fibrositis; DISH (2000: Diffuse Idiopathic Spinal Hyperostosis); It's all in the Mind (2002: nice one); Stenosis (2004: Op eventually performed 2017); Myelopathy; Myelomalcia (2019). No advice was offered from the 2017 Op surgeon OR the GPs. I have asked to see an NHS Neurological Specialist but am told there is a long waiting list (now already years) and am one amongst many. My option is to try and seek private, professional advice and treatment - if it's not now too late. On the basis of online disease diagnosis (Carenity, Mayo, GAIN, HSCT & others) CIDP appears to be a more-than-likely alternative possibility.
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Courtney_J
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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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Hi everyone,
How are you doing?![emoticon cute](https://member.carenity.co.uk/static/themes-v3/default/javascripts/vendor/tinymce/plugins/emoticons/img/cute.png)
How did you feel when you were diagnosed with CIDP? Were you given all the information you needed to understand it and its treatments? What about support?
Feel free to share your thoughts and experiences with us here!
Take care,
Courtney