Seeing my neurologist tomorrow

Good evening all, I know it’s late but u was just wondering if anyone has got any advice for me. I am seeing my neurologist tomorrow morning, does anyone know what I should as him? I’m SPMS, (I hope by saying that you won’t need anymore information from me), basically are there any new drugs available that wound help slow the progression. I deally I would have stem cell, but I’m not sure that’s available for SPMS yet. Anyway, thanks for any responses. I should have thought this through and asked you guys earlier. From Simon aged 32 and 3/4

Good luck Simon. have you seen this one before? Why are you going now? It helps to have more information. Were you on dmd.

I am PPMS the only thing there could have possibly been was ocrevus but i believe that has not been passed because we are not important enough.

Not sure what i would ask. Have you had recent MRI for disease activity etc. If the neurologist wants to see you i would see what they say. I dont think there is stem cell unless you go off to some weird country to have it. Multiple Sclerosis and Stem Cell Treatments

I think keeping as healthy as you can, exercise and diet is as good as most things, and pacing and rest.

sorry not helpful but i didnt want you to go off with no one answering you. x

Hello Simon

Yes, it was a bit late really. There was sooo much we could have advised you. Or rather, there’s not much out there for SPMS, so there’s not much really to say. I’d be more inclined to just see what the neurologist has to say and / or offer.

I hope the appointment had some kind of positive result.


Hi simon how did you get on hun?

Hi all, Firstly thanks for everyone’s answers, but, it wasn’t an appointment for my neurologist it was to see the bladder nurse (they send me letters under the consultants name, which makes it terribly easy to determine who I am actually going to see). To answer other questions… I think my last mri was about two years ago now. The nuero sees me every 6 months as a matter of course anyway. And yes, I was on tecfidera when u was RRMS but it didn’t agree with me (and I’m pretty sure that is what kicked me over to SPMS). So, yeah, I’ve now got a bit more time to look into what is out there for me… Thanks all for trying your best to answer with my limited information and the limited time I gave you. Whoops, sorry.

How very helpful, sending you appointment letters all in the neurologists name!!

I hope the bladder nurse was useful.