Tumefactive MS?

New diagnosis and before diagnosis
1

Hi folks,

New to the forum and I was wondering if anyone out there has a similar diagnosis to myself?

I’ve recently been diagnosed with MS (March 2016) after a stay in hospital (October 2015) for 7 weeks. I was admitted to hospital still walking (well shuffling!) and after a day I was paralysed on my right side from my neck down.

All sorts of tests were done, CT, Lumbar Puncture and MRI. I was given a course of IV Steriods which seemed to have no effect. I was then given a course of Plasmpheresis which began to increase my mobilty.

Upon discharge from the hospital my letter stated Clinically Isolated Syndrome secondary to Tumefactive MS.

I was re-scanned at the beginning of March 2016 and a second lesion was discovered confirming the diagnosis of MS allowing access to DMT treatment which starts next week

I did a quick search of the forum for Tumefactive MS but I got no results.

From using good old Google it seems to be pretty rare

Any thoughts, knowledge or tips would be greatly appreciated

G

2

Hi G

well it looks like you were lucky to get a diagnosis because it sounds like a tricky one to diagnose.

times like this i wish i’d studied medicine!

my poor raddled brain wants to switch off when i read a google search of conditions like yours.

great that you are about to start a DMT. which one have you gone for?

please stop worrying because it does n good at all.

good luck

carole x

3

Thanks Carole, I’m starting on Tecfidera next week hopefully this will keep it in check. I’ve got a great family who are supporting me through this but it is hard not to worry! G

4

Hello :slight_smile:

You could use the search engine on Barts MS Blog. They do have some posts on it.