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spoonies

spoonies

For stories, articles, questions about chronic illness such as Lyme Disease, multiple sclerosis, SLE, fibro and more.

525 members
Posted byTentacular_Vernacularin/spoonies-Sep 07, 2016 at 12:50 PM

CADASIL

  • Requesting Support
  • Chronic Illness
  • Diagnosis
  • CADASIL

Hey! I've got a tentative diagnosis of CADASIL (pending genetics confirmation, which will take 2 years, but the neurologist I'm seeing is fairly confident I've got it) and was wondering if anyone here has it?

Comments7
  • TheLizardQueenSep 07, 2016 at 12:54 PM

    I've never heard of it but I did a quick google for context. I'm so glad you have a supportive neurologist. Even if no one here has the diagnosis right now please feel free to post about your experiences and frustrations. I'll make a CADSIL tag if ya like? Just let me know.

    • Tentacular_VernacularSep 07, 2016 at 1:44 PM

      Thank you, that would be lovely. At least then if someone else has it maybe they won't feel so alone.

      • TheLizardQueenSep 07, 2016 at 1:53 PM

        Will do!

      • TheLizardQueenSep 07, 2016 at 1:55 PM

        Done! I added it to this post for ya. <3

      • Tentacular_VernacularSep 07, 2016 at 2:36 PM

        Thank you!

  • orange_monsterSep 07, 2016 at 12:56 PM

    I'd never actually heard of this until 3 minutes ago and can't be any help with that, but congrats on finding a hopeful diagnosis! It sucks that you have it, of course, but at least getting a diagnosis allows you to start making sense of things and start figuring out how to manage it better, which sometimes can make a huge difference! Sometimes not being able to understand what's happening to you and why can be just as hard as the illness itself.

    • Tentacular_VernacularSep 07, 2016 at 1:45 PM

      Thank you! It's nice to know I'm not going to die tomorrow or anything. I was rather worried it was something where I'd have only a few months left to live.

spoonies

spoonies

For stories, articles, questions about chronic illness such as Lyme Disease, multiple sclerosis, SLE, fibro and more.

525 members
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