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Tumefactive MS

Hi there. My name is Fiona I am 37 yrs young with two amazing teenagers 18 and 15. I was diagnosed in 2014. I had many things go wrong leading up to diagnosis but continued to soldier on because doctors don’t really know and you start to think your going crazy, because they don’t listen. Until one day i chucked my high heels on to go to work and i had no balance and fell straight back down. So i thought i wonder if i can walk in flat boots and i could but scuffing my feet a bit. So off to work i went but at lunch time i went to the doctors and I was sent to hospital for tests. That’s where I stayed and progressively got worse I couldn’t walk properly they found a 4 cm lesion in my brain a long with many other ones they call this tumefactive RRMS. It’s an aggressive rare form. Currently I am receiving tysabri and have been for over 2 years now I am also JCV positive. And half the time I don’t tell my nurse of anything new because they don’t seem to listen anyway. My entire life has been impacted on in a negative way in the form of relationships, financial work life and so on.

Work is tough because I am a slower learner now it needs to be repetitive for me to learn and this would only work if it’s a supportive environment. The days of work because you need treatment your to tired for couple days leading up and after but the it hits you financially also. Just wondered if anyone else here has the same. Cheers.

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  • Erin Rush moderator
    1 year ago

    HI Fiona and welcome! Thank you for sharing with the community. I am sorry your medical team is not more responsive to your needs — that’s unfortunate and probably frustrating, too!

    I know one of our members has shared about having Tumefactive MS. I am not sure if she is still active in the community, but here is one of her pieces on her MS journey —

    I hope it helps to know that you are not alone! Thank you for taking the time to join this community and share a bit about yourself. I know we have quite a few parents in this community and people that still have to work to keep their insurance, so I do think you can feel right at home here.

    Thank you again for being here and may you have a good day!

    Best, Erin, Team Member.

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