Fif_Ag75

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  • Fif_Ag75
    February 5, 2024 at 6:05 pm

    Hi friend!

    Thank you for sharing your journey- how tough it is out there to be HEARD and UNDERSTOOD. I truly am there with you and I am shocked at how medical providers can be so dismissive at times when we need that extra support the most. I definitely had similar starts to my diagnosis, it started with my face and then went down to me foot/leg and ascended. It is scary! I have been able to increase my walking distance, but it is more of a day by day thing.  I will have to look into doing some pool PT that is something that I haven’t thought about yet. But thank you so much for the tips! I will have to look into all of that and increasing my PT days too.

    Hope your days are easier on you and that your recovery continues to go just as good.

    Fif_Ag75
    January 17, 2024 at 6:27 pm

    Hi Tim!

    I don’t have any treatment advice for you, but I do want to share you are not alone. I was diagnosed with Miller Fisher in April 2022, and it has been a battle trying to get decent treatment/help. I am 25yrs old, so a lot of doctors that have seen me dismiss me into needing any extensive treatment because of my age. I have been in a wheelchair since but I pray to God that something comes along the way. I have sensation everywhere and luckily there was no nerve damage and I have pushed myself to walk with a walker at most 30ft which has been good! My spinal tap/CSF did show the bands as well which is why they diagnosed me. I hope you get the treatment and answers you deserve before it gets worse as it has been for me!