CIDP — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

CIDP

Options
iyah1612
iyah1612 Community member Posts: 2 Listener
Hi, I'm iya. i'm here to know other CIDP patients. I need someone who can understand my condition😔

Comments

  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    Options
    Hi @iyah1612 - & welcome to the community. We do have one member, @ClaytonGirl , that has Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) that I remember, but I don't think she's been active for quite a while. We do have a lot of members with various neurological problems that will have a lot of understanding. You'll find everyone here both friendly & supportive, whatever disorder we're living with, so I hope you enjoy looking around the forum & do join in with any discussions of interest. :)
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    edited September 2023
    Options
    Hell@iyah1612! Welcome to the Scope community :D So glad to have you here, our community members have a wide range of experiences and conditions.

     I've never personally met someone with CIPD (Chronic Inflammatory Demyelinating Polyneuropathy I am assuming?), but I'd love to understand it. Would you feel okay describing it to me and perhaps for other community members? Or maybe you know a good site that can inform us if you don't feel comfortable talking about your own situation.

    Also, how are you doing today?
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
    Want to give us feedback? Complete our feedback form now.
    Opinions are my own, such as mashed potato being bad.
  • iyah1612
    iyah1612 Community member Posts: 2 Listener
    Options
    thank you so much for a warm welcome. 
    Let me share you the symptoms I had before I was diagnosed of CIDP.
    I am working as an ESL teacher. I first noticed it maybe oct-nov 2022. There's some tingling and numbness on my fingers. it doesn't go off. (until now) but i keep on ignoring it. then it goes down on my feet.same feeling. i feel like I'm floating. February 2023, when i woke up i couldn't get up. that was the time i decided to consult a neurologist. I was scared at that moment because my feet were so numb and weak. I ran different lab tests, blood tests, etc. and turned out negative. The dr. advised me to undergo some nerve test and electromyography test which
    measures muscle response or electrical activity in response to a nerve's stimulation of the muscle. The test is used to help detect neuromuscular abnormalities. During the test, one or more small needles (also called electrodes) are inserted through the skin into the muscle. After all the tests, I was diagnosed of CIDP. I was confined in the hospital for 5 days to undergo IVIG test. This therapy can help people with weakened immune systems or other diseases fight off infections. when I was discharged from the hospital abd the steroids are wearing off, it was terrible 😔. it was like killing me. it's like burning inside my legs and arms. The only medication I have is to take steroids for 4 days every month. so far, I don't see any improvements 😔
    as of the moment, i am feeling weak and depressed because I feel like i can't live my life normally. I can't balance myself without holding on to something. I have checked some other posts that they undergo this plasma exchange treatment which is expensive. Some say I need to undergo therapy. I can't even afford those. Whenever I am in pain, I couldn't explain it completely because no one can understand it unless you are also a CIDP patient 😔

  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
    Options
    I'm sorry to hear that, I'm glad you at least got a diagnosis so you know what is wrong. When you got the diagnosis and the resting was done were you not given next steps or were referred to any kind of treatment? I imagine your GP may not know how to treat it, but have you tried to get them to refer you for any treatments or therapies that can help with  the symptoms?
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

    Concerned about another member's safety or wellbeing? Flag your concerns with us. 
    Want to give us feedback? Complete our feedback form now.
    Opinions are my own, such as mashed potato being bad.

Brightness

Complete our feedback form and tell us how we can make the community better.