The Call-me-murphy story

By Kate

3 min read

So.. Hi! My name's Kate and i have NMO since possibly 3 years old .

Early health difficulties

My story starts dynamically at one of my basketball matches. A girl pulled my arm with force (we are talking about "I'll rip it out for ya " kind of strength" ). and after that i couldn't move for days . I already had my family calling me lazy cuz I "wouldn't walk properly ". Of course since i was a kid i didn't notice anything.. i was just ... walking.

Anyway after the match, i did some medical exams and they found.. nothing. Nothing at all was wrong with me . Even though i walked like a penguin had stomach issues and went randomly numb wherever, I was just lazy and constipated. 😆 This went on for about a year and a half.. in that year I fought a lot with my folks and was terrified. (Having my grandma crying over because I'd Die if i didn't visit the WC. I was crying they were crying and my left leg basically said "bye- bye " WITH a bit of my left hand.
I don't remember much from the whole time we were at the hospital.

Overhearing nurses

I remember overhearing the nurses gossiping, they were saying i was dying soon . Like two weeks soon . From what you can tell I'm still kicking (heh not physically tho). The doctors had me basically drowned in steroids, i was 53kg and went up to 81kg in a matter of two weeks and they were about to make a biopsy.(Idek)

NMOSD diagnosis

A nurse actually suggested i may have NMO, he was right! Like i said before, lots of steroids ,lots of MRI ,became the moon and i started walking after 4 weeks or so! Full recovery BUT with conditions. I shouldn't for some reason participate in P.E. but I would do physiotherapy.(How does that work??) Anyways, sorry I'm babbling.. long story short it's been let's say a decade
And I was told by the doctors that by now I would've been "stabilised " or whatever this means from this hellish
Ride. Didn't happen like..AT ALL i lost my vision (mind you i was going to be a graphic designer) I dropped out of university in the first THREE WEEKS .

First NMOSD relapse

"A pseudo-relapse!" Said my new neurologist. And just like that i lost aaaaalll the social connections i made AND a uni i actually liked . 2022 was the dark ages for me .. im not proud to say , i didn't take it lightly. Tried again on another uni 'was out on the second week ! A fellow student decided she MUST come even though she had developed pneumonia . PNEUMONIA! WHO DOES THAT ???? I was lucky it was light it lasted three weeks and I dropped out of there too . It's funny cuz i went to the second
University not only thinking it'd be better i actually " won" a scholarship on that one. Lmao!
I started developing a comic on my own had NO problems with my hands and GUESS WHAT ! My right hand my DOMINANT hand decided to leave without me! Its been more than six months still not healed as a gift I got tonic spasms !! Each lasting about 40 seconds to 5minutes (please help any tip would be DIVINE). I take every pill known to man every single day still nothing.
Right now I'm at a point that i REALLY want to live life , have dreams , even meet a boy or a girl at some point .
If you asked me what i wanted three years ago I'd say a bullet on my head .

A positive outlook but looking for advice

But 'thing is I'm past that. No, the lord didn't save me. No, the therapist didn't help. i just tried to live for my mother's sake. I don't want to tell her but nothing seems to help anymore. Tegretol,Diazepam, Steroids (Medrol form) and SO MANY more . If you have ANY tips/suggestions, anything!
Please tell me.
Thank you for reading this far!
(I'd also like to make friends, sooo if you have no suggestions but wanna talk about anything and everything I'd love to!)

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DarlinDD Member
Plasmapheresis (Plasma Exchange/Plex) after steroids is usually helpful but for spams, Gabapentin might help. The latter didn't work for me so my neurologist gave me Lamotrigine which worked wonders. Problem with that is one of the side effects is profuse bleeding all over the skin which, thank God, didn't happen to me. I also stopped taking it after about a year. After a few months if I felt the beginnings of an electric shock I'd take one daily and up the amount to two daily but usually didn't do that more than a week and actually only needed to do that twice due to Soliris. I started Soliris infusions every other week after rehab which came after steriods, Plex, and lamotrigine. When I'd had whole body spasms my right hand would turn inward and unfortunately, it became permanently clawed right before I started Soliris. But the infusions worked well after about six months. I was no longer staggering and falling backwards, and I was starting to get back to normal. About a year or less I was able to use my right thumb and forefinger which is a blessing. After two years I was better with less pain, less skin sensitivity etc, but just a few months ago I started Ultomiris (ravulizumab-cwvz) and feel almost like my old self! The vibrating is barely noticeable, no staggering at all, and I feel just plain good. Bonus is that I only have to go every two months for infusions so less costly or at least that's what the pharmacist said when I asked. Now just about the same time I started Ultomiris I also started grounding with my bare feet on the ground for 15 minutes daily so maybe it's a combo of the two that has me feeling so well. I suppose I'll find out when it gets too cold to ground. But so far I highly recommend Ultomiris. It's expensive though, much like Soliris and the VA pays for it for me as I'm a veteran but there are discounts. I figured out almost three years ago that I'd be paying approximately $500 monthly with discount and no insurance which would've been worth it to me. And, again, Ultomiris should be cheaper as it's just six times a year. From earlier research, I read that Enspryng stops relapses and helps some end glucocorticoid use if they're on that. And I read that Tocilizumab is effective for NMO. Plus there's Inebilizumab, an anti-CD19 agent, and Satralizumab, an anti-interleukin-6 receptor, as well as older treatments that have helped many. One of those is Rituximab, "a monoclonal antibody often used to treat NMOSD, costs about $18,000 a year. The cost continues to decline, as the medication is now off patent." I'd asked my neurorologist about that but she said my NMO was so severe that the VA experts at two hospitals had decided Soliris was best for me. Soliris is one of the most expensive drugs out there I think but again, discounts might be available. You could google all that or talk to your doctor. Unfortunately, no doctor at the VA or civilian hospital that gave me Plex knows how to help me with my hand. I recently discovered that some people with MS have the claw hand problem. I used to write/type up stories, fan fiction mostly, and draw the characters, I wasn't bad at all, but now that's a bust so I have an inkling of how you must feel. By all means, talk to your neurologist and see what might work better for you. Also, look up the side effects and inoculation requirements. I hope this helps you in some way. It's an awful disease and maybe because I'd just turned 60 when it struck me I particularly feel for young people who have to live with it.
Kate Member
<inline-mention username="DarlinDD" user-id="4279093"/> Thank you so much..! I can't describe how much you're helping right now and how moved you got me :'&#39😉 , I'm actually in tears right now . I will research everything you told me to And hope for the best !once again thank you !
1. DarlinDD Member
 <inline-mention username="Kate" user-id="8587526"/> You're very welcome. I hope and pray that you find the right meds and get better.