@Heatherdoodle 

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Heatherdoodle

Does anyone else have Tumefactive MS?

After 8 months of scans, lumbar puncture and tests I was finally diagnosed with Tumefactive MS last month. To be honest I was relieved to be diagnosed as knowing something was wrong but not knowing what was very scary. In hindsight all the symptoms were there but it wasn’t until I ended up in hospital after losing the use of my arm that I went through all the tests. I had been scanned 18 years ago but only my spine and nothing showed up. So I’ve been dealing with it for 18 years hence the relief. As Tumefactive MS is rare, there’s not a lot of information out there!
@ScottJ

Hi, you could maybe try the MSTrust under A-Z of MS. Types of MS, this type is described under rare but you might need to send them an email. Good luck, I hope you find what you're looking for. https://mstrust.org.uk/information-support/ about-ms/types-ms

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@Lucaslavelle

I have tumefactive ms

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