Still cooking¡

Allison DiVirgilio

My NMO came on very gradual, years back my right foot started to feel numb, then it crept up my shin, my knee, then the same to my left leg. I am a chef and ran a catering company so I spent crazy long hours on my feet and I wrote it off as it was my job. The doctors appointment madness started, testing for everything  under the sun. Diabetes, Lyme,bulging discs,spinal  taps, physical therapy, accupuncture, crazy meds, chiro, injections In my spine,Frankenstein zappings, meds,etc The list goes on. Fast forward to my second hospital , my neuro feels it’s MS. More meds, too much steroids,Ampyra, Baclofin,etc Still the doctor scratches his bald head, literally tells me he is confused. Off I go to my third Neuro, he is the one who suggests NMO and sends me to Another Neuro who  I  refer to as ” THE MAN” literally my very first appointment,he  had me at his lab, tested me and came to me with guns blazing , it’s NMO. I am Antimog negative but my lesions in my spine  tells him a different story. I have crazy bad numbness in my lower legs and balance issues, The heat and cold bother me,  very minor optic issues, bladder issues,etc He  immediately got me started on  RItuxan and after 2 years of Rituxan, I am  still stable with no new lesions.  It took me a LONG time, much needed wasted time in getting a diagnosis, it has really dragged me down mentally, not just physically.  It was a very hard pill to swallow in my mid 40’s. I didn’t talk about my feelings ever, it ate me up. I felt like every day I was loosing my dignity, my sexuality, my spark. I am still learning  to deal with my not so new world. My hubs and kids(15, 11&11) have been awesome, who knew they would be the ones holding my hand and helping me get around.  I am thankful to still be able to what I love for the most part, it’s on a much smaller scale but I am still in the kitchen ,working and getting around like a drunk sailor!! Every day I am thankful to have found the doctor that diagnosed me ! 

Still Cookin!

1 Comment

  1. Lisa on August 16, 2019 at 6:19 pm

    Thank you for sharing. Your story sounds a lot like my daughter who was diagnosed at 38. Hospital stays, optic issues, bladder issue, numbness hand legs etc. finally one dr. Got the diagnosis. Ruxtxin and Chemo, too many steroids and a big bag of meds. I pray you have stable health. God bless you.

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