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 !
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.
What did u experience in the interim while they were trying to figure it out? Were you experiencing newer and worse symptoms? I’ve recently been diagnosed with TM and NMO..I’m experiencing newer symptoms ever since I’ve been discharged which was sep 25, 2019. Example yesterday I was awakened in the middle of the night with like this rightness around the upper portion of my rib cage
It’s very uncomfortable and has not gone away
Then today I could barely stand up..whereas yesterday I was walking around with a cane and doing much much better than today
I do all the exercises that I’m advised to do daily but today my legs were so weak I couldn’t
What can I expect with this condition.ove seen testimonials on you tube but no one goes into detail of what to expect post diagnosis or post release from hospital . They never say if they have to take immunosuppressants life long or how s it been working for them or if they’ve experienced and relapses. I need a support group.