Forum

How often do you...

…See your MS specialist? Just a general question really

I see mine once a month minimum unless ofcourse i feel i need to than in that case i have a contact number for her

Wow… once a month??? That is frequent. Can I ask what happens at your appointments given that you have them that often? I mean is it just a check up or is it because you are on Tysabri and you get seen as apart of that routine…?

I am supposed to see mine every 6 months unless something goes wrong in between which means in reality I see her about every 3 months but this year I have seen her 5 times already and I have another appointment in 2 weeks. (Been a bad year)

Belinda

hi

last saw in 2007,waiting for appt to see soon cos of recent relapse. but i am not expecting him to do anything!only because i dont think theres anything he can do. steroids made no diff to me-had them twice before. so wait and wait …

ellie x

I will echo Belinda “Wow once a month”

I am SP though and there’s nothing they can offer me.

Appointments last about 10 mins and are pretty pointless so I really wouldn’t want to go every month.

Jane

Kevin, ln 30yrs - l have yet to see a MS Specialist!! After initial diagnosis - it was another 26yrs before l saw another neuro - who straightaway admitted not knowing very much about MS. l waited an hour and a half in the waiting room - and had about 5mins consultation with her.

l rely on the MS specialists on this forum for advice!!

F.

I’m guessing that was a slip of the fingers, Kevin, and you meant once a year!

I think that’s about normal, particularly for people on DMDs (it is for me, give or take.)

Alison

x

Annually also ,I actually posted this same question on a different thread in PPMS, very interesting but wow once a month, what type of ms do you have Kevin?

hi kevin

i’m same as belinda,got nurse phone and email,so in contact and she replies quickly to any questions

Ah, never occurred to me it might have been a typo…

As Alison says, once a year sounds much more likely.

If you really did mean once a month, do you want or need to go that often? What do you find to talk about?

As a rule, I only go once a year. Exceptionally, this time, I’ve got a follow-up after only six months - as he wanted me to cut down Baclofen (which I haven’t, at all, and not planning to, so expecting to get “told off”).

Tina

Feeling sorry for myself as my MS specialist said ’ there’s nothing I can do for you,I won’t see you again unless you wish to see me’ ( PPMS), so I don’t even have an annual visit! Teresa xx

Thats awful Theresa, reason I asked on the other thread was when I went to fill in review forms the lady assisting said oh only once a year that might be a problem as the DWP may think you don’t require treatment, I put her straight that there wasn’t anything and she incorporated this well in my papers.

Yeh; just like Campion have not seen one in 30 years. There as useful to me as a Duck Billed Platerpus (PPMS).

There seems to be such a variation!!

I see my MS Nurse every 3-4 months, but this has only happened since I started on Copaxone.

One a year… but with ppms it hardly seems worth bothering. Nothing they can do.

Once a month? It’s surely a typo or maybe Kevin you are private patient?

Pat x

I haven’t really got an MS specialist.

Last one I saw was when I was diagnosed I guess.

That was 12 years ago.

OY!!! As an Australian I take exception to the slur on our platypi

B xx

PS It never occurred to me that Kevin might have meant once a year and once a month may be a typo. That would make more sense…

see mine every 6 month

I see mine every 6 months unless I have a relapse, in which case I can generally see him as soon as I need.

I saw one every 3-6 months for the first couple of years and then not at all for 4 years (my choice; the appointments were a complete waste of time). Then every 3-6 months for a couple of years. Then not at all for 4 years (I got lost in the system, but wasn’t bothered as I was well). Then every 3 months for a couple of years. Now down to 6 monthly and I expect to go to annually when I next see him because I’m doing really well again.

So basically every 3 months if my MS is very active, followed by a couple of 6 monthly appointments as things quieten down and then not at all or annually until things kick off again.

I don’t see my MS nurse at all. If I need to, I phone her and she gets back to me (eventually!), but I don’t have routine appointments. No idea why not actually. I know others at the same hospital do.

I guess they change the service to meet the need. (In theory at least!)

Karen x

I’ve never seen an MS specialist, only my neurologist, who is useless, love Bex xxx