With the possibility of trials etc. I was referred by my rehab consultant to a London doctor. I’ve kind of said this before - I saw him a little while ago and explained my thoughts on why I believe I might not have PPMS and some other concerns. I had new MRI’s and then the bizarre phonecall at the weekend where an active lesion was discussed & a possible trial.
I saw the consultant yesterday and he was aware of the call, having been asked permission to approach me!
We looked at my MRI and the active lesions BUT I didn’t recognise the MR’s… there’s a lot of scarring but we talked about the lesions/trial etc. I checked if the offer of DMD’s is still on the table if the trial doesn’t go ahead for me, yes! I wimped out a bit tho as my husband even said “well he didn’t actually say it was RRMS”. And neither of us actually asked a direct question. He booked me in again for a few months time and agreed he’d give me Tecfidera (although he’d rather I opted the Tysabri) but I could cancel it if trial went ahead.
This morning, I went to see the doctor about the trial - so I asked her straight out if PPMS vs. RRMS - definitely RRMS apparently as resolved & active lesions!!!
So, I feel like there’s at least some renewed hope and treatment available - I’m a bit delirious at the moment as I’m sure you can all imagine
I truly hope I can still come here as you guys are so lovely that I’ll miss you - and I still want to know how you all are. You can laugh at me when I have the tecfidera flush etc. Oh, and the trial is for rapidly evolving MS so might impact PPMS & SPMS too - it is one of the reasons I’m so curious about it. Not like HSCT as there’s no chemo etc.
Love you all as you have been there for me when I’ve had some very dark days