12 months after original appointment with gp have finally got diagnosis of MS. I’m not as upset about it as some people seem to be but maybe that’s because after the first MRI scan I was told could be early onset Alzheimer’s or MS and of those 2 options MS seems the preferred option! My tests and diagnosis were done privately but now been slotted back into NHS with first appointment with same consultant I saw privately due in January.
What is likely to happen next? Any advice and guidance gratefully received
your appointment in january will be the official telling you that you have ms.
the neuro will want to know if it is RRMS (relapsing remitting) or PPMS (primary progressive).
i think they get that info from MRI scans and your clinical history.
if you have RRMS you should be offered a DMD (disease modifying drug) and be introduced to your ms nurse.
i don’t know how you are in such intense situations, remembering the questions you want to ask and remembering that the neuro said but if you think you may need to, take someone with you.
right! your homework is to find out about the DMDs.
you may have read on these posts about some of them.
there is a fantastic choice these days.
feel free to message me if you want more info or just start a new post.
Had my first appointment with my consultant yesterday as he slotted me into the NHS. After looking at this site and reading the forums I was expecting him to talk about DMD but he didn’t. He just checked to see if any of my symptoms had got any worse and told me he’d arrange for me to see the MS nurse and an appointment with the Balance clinic. He also said he’d see me again in 12 months. Thinking about it and discussing it with my husband (who came to the appointment with me) afterwards we were wandering if we should be concerned he didn’t discuss DMD’s with me? what is the view of people on this forum? Not sure when the appointment for the MS nurse will come through but suspect it may not be for 6 months - he muttered something about seeing him every 12 months and the MS nurse in between.
Im newly diagnosed too and am wondering about which if any drugs I should be taking. To the very limited extent that I know anything about MS, I think that (unless its Primary Progressive MS) then u should start DMTs as soon as possible. BuT i might be wrong about this.
Sometimes when you go into an appointment expecting one thing you get a bit dumbfounded when you get something else. And you both end up forgetting to ask relevant questions.
You’d normally expect to be told what variety of MS you have. And assuming I’d relapsing remitting, offered a DMD.
Regardless, you’d certainly expect to be given the contact details of the MS nurse and to be getting an appointment with her/him soon, not in 6 months time.
I would suggest you contact the neurologists secretary for some more guidance. Ask for the contact details of the MS nurse. Ask him/her when you’re likely to have an appointment to discuss DMDs. If the secretary can’t answer you, ask if you can email the neurologist. They are unlikely to give you the neuros email address, but they could give you their own and forward it on to the neuro. In which case you can ask the questions you need answers to.
Obviously, if you happen to get contact details for your MS nurse, then he/she can do this for you.
