So I was diagnosed yesterday morning. I knew diagnosis was probable in the future but I expected yesterday’s appointment to be about referring me for a lumbar puncture/EVP so it was a bit of a shock even though I’ve known for months I’ve got MS. As it turned out the neuro said he had enough evidence from my history and the MRI so at least I’m being spared a lumbar puncture! I had a blood test while at the hospital to check for NMO but the neuro thinks it’s unlikely. I’ll have a further MRI in December and he’s going to ask his MS nurse to get in touch to discuss meds etc.
So … I have questions!
When should I expect to hear from the MS nurse? I’m sure this varies all over the country, I’m under the Tunbridge Wells hospital if anyone has experience there?
How long do NMO bloods take to come back? I understand they’re sent to Oxford?
I’m going to have the meds discussion with the MS nurse, but from our brief chat about DMDs yesterday I won’t be offered Lemtrada as a first line which I was a little disappointed about as I wanted to hit it with everything possible from the off, but will be offered Tecfidera or another oral medication that begins with T, can’t remember the name though. Does it sound right that I won’t have access to Lemtrada? Has that been the experience for other people too?
Finally, any advice for telling my nearest and dearest? My husband knows as he was there with me yesterday but I’ve got to tell my dad, brother, my very anxious mother and my fourteen year old son who has already had a really rough couple of years bless him.
I understand I’ll need to inform the DVLA? At what point do I do that? Immediately? When I’ve spoken to the MS nurse? I’m on my husband’s insurance - I take it I have to inform them? Is there anyone else I need to tell? Can’t think of anyone but thought I’d check.
Thanks very much