Hi, I have recently been diagnosed with a rare form of MS called Tumefactive MS, 2 weeks ago I suffered 2 seizers and I just wanted to know if anyone else has experienced similar, what advice they were given at the time (from Consultant, Dr’s and MS Nurses) and any follow-up treatments that they were given?
Thanks, just feel so alone and have no-one to turn to apart from family.
Hello
I’d never heard of Tumefactive MS before, so I’ve just looked it up.
You certainly picked a short straw with that one. It’s very rare. And you must have had a decent neurologist to pick it up.
It looks like it’s possible to go into remission with it. I’ll keep my fingers crossed that this happens for you.
If there is anyone who also has it, maybe they’ll answer your post and help you to feel less alone. Meanwhile, since we’re not all the same either, we will do our best to support you.
What are your symptoms? Do they vary much from more regular MS? Have you been offered treatment? Somewhere I saw that some of the DMDs taken by people with RRMS help.
Sue
Hi Sue.
Thank you for your reply. My symptoms are tingling & numbness in the face,feeling extremely tired, joint pain, heaviness in my legs, pins and needles in my hands and Optic Neuritis. I have been on steroids for a few months now, started on a high dose and have since been reducing the dose down as instructed by the MS Consultant, currently taking a 8mg dose. I have had 2 infusions of Rituximab and I’m due another infusion in March 2018.
Consultant has been fantastic throughout but the support in-between hospital appointments has been sadly lacking, been feeling very low of late and I think that the diagnosis of MS is only starting to hit me, it’s been quite an awful year and one that I don’t wish to remember.