Clinically isolated syndrome — 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.

Clinically isolated syndrome

lizzie_loo
lizzie_loo Community member Posts: 4 Listener
So I was diagnosed with transverse myelitis.. at my appointment a year ago I was under the understanding I was just diagnosed with that.. but they hadn't received my lumbar puncture results. Got a call a few days later saying the spinal fluid was inflamed meaning I was at a higher risk of another attack. Anyway last Monday I had my follow up appointment. Scan showed no new lesions which was good.. but I came away feeling they were just waiting for a reason to be able to diagnose me with ms. Tonight I had a new painful twitch in my ankle and it panicked me. So I read over all my hospital notes. Turns out that in that phone call I was told I now have the diagnosis of cis. I just must have misheard or misunderstood. I feel.so lost and confused. I obviously still get symptoms due to the scar tissue.
 But I find myself worrying more and more at every little pain or twitch. I feel like im just waiting for that diagnosis of Ms..  and after googling cis does come under the first part of ms. Sorry for the long essay. I'm just worried and confused. 

Comments

  • Alex_Scope
    Alex_Scope Posts: 7,562 Scope online community team
    Hello @lizzie_loo sorry to hear about the worry you've been experiencing, how are things at the moment for you? Have you spoken to your GP about how you're feeling lately, or to anyone you're close to?

    Often talking about things can be a real help, so well done for reaching out :) Let us know if we can help support you.
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,979 Disability Gamechanger

    I can hear how you feel so lost and confused @lizzie_loo – this sounds really difficult  :(  Is it the diagnosis of cis that is making you feel so lost and confused or is it that you feel you must have misheard/misunderstood? We are here for you and listening to you if you would like to share more with us  :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

Brightness

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