AMSAN

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This topic contains 6 replies, has 5 voices, and was last updated by  Jim-LA 1 week, 5 days ago.

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  • #111548

    Angela White
    Member

    I was diagnosed with GBS back in June 2014; My original Diagnosis was AIDP, six months ago it was changed to AMSAN. Anyone on here have this variant or know anything about it. I’m trying to wrap my head around the 5-6 years amount of time I was told it could take) before I regain feeling in my feet

    #111572

    GH
    Participant

    AMSAN is a variant which attack axons. Damage to myelin heals relatively quickly and completely. Axonal damage takes a long time to heal and it may never heal completely.

    While I am not classified AMSAN (or AMAN), I do have some axonal damage. Five years out of hospital, I still have residuals from the knees down. I don’t expect my feet will ever stop hurting, so I just accept it.

    Some feeling in your feet should have come back after two years, but they wouldn’t be normal. Do you have no sensation in your feet? Give it another year, at least. You can still be making progress up to three years or so.

    #111577

    Angela White
    Member

    GH-I can feel some vibrations now. Anything I step on hurts like hell or I don’t even realize I stepped on it, kind of varies. I just read over my neurologists clinic notes and he graded my reflexes and sensations. Either the feeling will come back or not. Either way I can live with the outcome.

    #111582

    GH
    Participant

    What can happen is that sensation can come back in some nerves and not in others. In my case it is mixed like that. As for foot pain, it increased as sensation slowly returned, then subsided. Now it is mostly discomfort rather than actual pain, although sometimes there can be pain stepping on something or just being on my feet too long. I don’t take anything for it.

    #111620

    EMartinelli
    Member

    I was told a maximum of two (2) years for symptoms to regulate…. and possibly longer but rare. I am 1.8 months out and my understanding is that everything I am dealing with will likely be the same moving forward.

    #116502

    Matthew Ogden
    Participant

    10 months with AMSAN working driving walking but ankles are shot no running and tons of burning horrendous pain in my feet told this is good means nerve regeneration all they give me is more Gabepentin I have gained so much weight!!

    #116504

    Jim-LA
    Participant

    Please take the time to read the posts about AMAN/AMSAN in the following thread, there is a good deal of information there that might be helpful:
    https://forum.gbs-cidp.org/forums/topic/axonal-guillan-barre-aman

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