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5 months with MS

I was diagnosed day before Thanksgiving. Was having lots of trouble seeing still am. Have brain lesions but also a AVM on the right side of my brain. Worked in healthcare all my life in 2021 I'd been at my job quite awhile been promoted had my own office then suddenly life changed I had a massive seizure at my job had to be life flighted even died but was able to be brought back, that was the AVM. I came back to work weeks later but nothing ever was the same I often forgot things my concentration was off had tingling in my left side there were time I questioned I thought I was having a stroke as time went on I was getting leg pain and went to a Dr. He said he thought I had MS but when I told my regular physician she had stated it was my AVM as some things from it cause it. Then this year around October my eyes went blurry immediately I was given an MRI because of concern of a brain bleed. Nuerosurgeon came back with no brain bleed but pretty sure you have MS as I had brain lesions and was sent to a nuerologist who specializes in MS who gave my high dose infusion of steroid treatments which cleared some lesions and more appeared. I'm on Kesimpta along with 2 seizure meds. I went from working full time to part time to now not at all My Dr has applied me for disability and I'm trying to figure out who am I now everything has happened so fast everything seems different all the time. I used to play piano and a little guitar I can't see the notes right now I can't stand the daylight I start eye injections next month. Hopefully that will help so maybe I can get some of my independence back.

  1. Hi , I'm glad you found our site! It's a scary and confusing time right now, I know, I've been there. It sounds like you're doing everything right though. Things may get better after you've been on treatment for a bit. Definitely go through the disability process (which is not fun) but remember that it's not the end of things. People do go on and then come off disability. People do improve and people also learn how to adapt. So don't give up hope and remember that it often takes being on treatment for a decent amount of time (even a year) to really reap the benefits. I've been involved with MS most of my life, first with my grandfather and then me (diagnosed 23 years at this point), and I can honestly say that while it's never good to be diagnosed with MS, this is the best time in history to have it happen. The treatments available today are game changers and truly remarkable, even when compared to just 5 or so years ago. I'm sure you feel like your life has been turned upside down but don't hope, you will get more independence back. So hang in there and remember we are here for you!

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