@Naughtyangel247 

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Naughtyangel247

Tumefactive MS

My husband was diagnosed with relapsing remitting MS about 12 years ago and has been relatively lucky with few relapses. In March he had difficulty walking that didn't pass in the typical week pattern he was used to and so his neurologist arranged for scans. They found "unusual appearance" of left hemisphere of his brain in addition to his MS lesions in right side of brain. 7 months later he has had multiple scans, blood tests, lumbar punctures and brain biopsy and Drs still not sure what it is. They have ruled out TB, CJD, toxoplasmosis and many other parasites and viruses. There are a few parasites and fungal brain infections still being tested as all tests drawn a blank so far. They have said it's looking increasingly possible that this is a very rare form of the rare for of MS called Tumefactive MS. His RR MS mostle affected mobility and bladder control. This other brain issue has caused sight loss, loss of bowel controls, severe mobility issues and difficulty swallowing. He has been in hospital 12 weeks already this year. Has anyone else experienced tumefactive ms?
@BrandyAshyre

I also Have it. I was Diagnosed in 2020 after losing vision, ability to understand, eventually progressed to not be able to stay awake. MRI showed a huge area of “something” so I was a severe case that was sent for a brain biopsy days later. It inflammation from a Tumefactive lesion that spread from my right occipital lobe toward parietal. So I was Impaired in many ways. Some things have improved but most have altered my life forever