Hi all, I’m newly diagnosed since admittance to hospital in April via A&E. I presented with jumping vision and generally not well. After MRI, lumbar puncture and finally brain exploratory surgery to find out what was flummoxing the docs/neurologists. Eventually diagnosed with Tumefactive MS - lesions mimic those of a brain tumour.
I stayed in hospital for 6 weeks and moved to Rehabilitation for a further 6 weeks. No MS “typical” symptoms until the day after I got home from hospital mid June when Numbness / Burning / walking difficulties all flared up - great timing when I had just got home to my family! im still in this flare up 7 weeks later. I have had 2 x half doses of Ocrevus Infusion with this time frame with no bad reactions.
My Q is does anyone know if Tumefactive MS has flare ups ? Am I to expect a remission anytime soon?
My neurogist / MS nurse have no answers for me as I think they do not know ! I’ve been told my diagnosis is new, I’ve had brain surgery but I have no patience … Any opinions greatly appreciated and hope you’re all keeping well in these Covid times.
So sorry to hear you’ve had such a difficult few months! What a lot to go through in such a short space of time.
I haven’t heard of your type of MS in particular but from what I understand if it is progressive rather than relapsing in nature then there are far fewer drug options available and it sounds as though you’ve started on a drug normally used in relapsing/remitting MS. So I would assume that would mean they would expect you to have relapses followed by remissions. Hopefully a remission not too long away if you’ve already had symptoms for 7 weeks. On average they last about 8 weeks but this can vary hugely.
It must be very frustrating that they are unable to give you more answers. But it is good that they have diagnosed you and got you started on treatment so quickly.
glad you’re finally home anyway. Lots of good advice to be found on here so do keep posting with questions, some of the members I’m sure know more than some neurologists!
Hi, I`ve never heard of that type of MS either…must be very rare!
I thought Ocrevus was for PPMS…a type that does not normally have relapses.
The hospital admission and rehab sound pretty scary and so unplanned!
Hope you do get some relief soon.
Ocrevus is also offered for RRMS
I’ve had a think and I’m not gonna let negative thoughts invade !
im gonna keep thinking positive that I will get a remission …just gotta ride the storm!
thanks everyone for the replies.