How long to see MS nurse?

New diagnosis and before diagnosis
1

Hi all,

I was diagnosed with RRMS in November, about 10 months after noticing first symptoms (numb feet, limping, etc). I’ve since seen my neurologist a couple of times to discuss treatment options and he has now prescribed Rebif, but I am still waiting to hear from an MS nurse to actually begin the treatment. The neurologist and the MRI radiology staff are the only medical people I’ve seen since my GP referred me.

How long is normal to wait to hear from the MS nurses after diagnosis? I’ve seen a couple of threads suggesting that people have been seen within a few days or a couple of weeks, whereas I’m now at 3 months and counting. I’m clearly keen to see someone and start on the DMD to try and limit future problems, and the neurologist did his nut at my last appointment when he found out that I hadn’t been contacted. I’ve left messages with his secretary to advise that I still haven’t heard anything, but no response.

To complicate things, I’m not entirely sure which MS nurses I’m supposed to be seeing - although I live in one county with its own hospital and MS nurses, I’ve been seeing the neurologist in the neighbouring county where I work, which has its own team.

Any advice on who to contact and how to progress?

2

When i had my first appointment with my neurologist and was officially diagnosed. My Neurologist introduced me to my ms nurse.

I then had a follow up appointment two weeks later with my ms nurse to answer any questions i had.

I would keep contacting your neurologists secretary and asking her to find out what’s going on.

3

Hi, I also think you should contact your neuro’s secretary again & keep on contacting until you get what you want.

You’ve already decided on which DMD you’re going to have, so you just need the MS nurse to show you how the drug is administered. I was on Rebif for a few years & found it good & easy to use.

I was also lucky to get to see my MS nurse very quickly, about three weeks after diagnosis. They are in short supply though & very overworked, but keep pushing for an appointment because after the initial meeting you’ll be on her books & probably see her quite regularly, you’ll have her phone number too.

Good luck

Rosina x

4

hi

could your gp help by contacting the ms nurses on your behalf?

a bit of a problem with you possibly coming under 2 authorities but it could mean you have double the opportunity to contact them.

carole x