MS nurse

New diagnosis and before diagnosis
1

A question for you all. How long did you wait between diagnosis and behind contacted by the MS nurse? Was told a week a week ago by the neuro consultant she was going to refer me just wondered how long it took to be contacted?

Diane

2

Hi Diane, It varies, the first MS nurse I had took about 3 weeks before I actually met her. Since having moved quite a distance away I am still waiting to meet my new MS nurse after 6 weeks. I hope she contacts you soon, if not chase them up. Good luck. Janet x

3

Thanks Janet.

4

I believe that once you’ve been diagnosed, you can usually self-refer. The wheels turn slowly at my hospital, so I called and asked to speak to one of the MS nurses…:slight_smile:

5

My neuro had CC’d my MS nurse into a few letters. So I used those contact details and contacted her directly.

Try calling neuro sec or the hospital to find out who your MS nurse is if you haven’t heard anything in a week or so. Ask them for MS nurse contact details and go from there.

Good luck! xx

6

Hello Diana,

I’m meeting with my MS Nurse for the first time tomorrow. It has taken two weeks for this appointment. I’ll let youknow how it goes.

Amber,

7

I need to speak to my MS nurse so I rang her on Friday, The recorded message said one of the Nurses (our area has two) would be manning the line Wednesday and Thursday afternoons this week. I rang yesterday to a message that said she would be available today between 1.30 and 3.30 I rang today and got the engaged signal, I rang again ten minutes later to a message saying due to unforeseen circumstances it would be next Wednesday before someone would be manning the phone…I hope the area you live in has a Neuro service that is staffed sufficiently for the number of patients it has. Both our Nurses are lovely caring people but you can only do so much in the time allowed You could be in for a long wait so don’t hold you breath. Best wishes

8

Thank you all for your replies. Her reputation is very good so I will give her another week then if I haven’t heard anything get in contact. Think like all NHS areas its a bit of a lottery unfortunately but hopefully she will be as good as her hype.

Diane

9

My neuro copied in the MS nurse on the letter he wrote to my GP confirming my diagnosis (he copied me in on the same letter, which is how I know!), and it was only took a couple of weeks for the nurse to write an introductory letter to me inviting me to contact her. I rang her and left a message on the answer machine, she rang me back the following day and since then (mid-February) I haven’t had any further contact - there’s been nothing I’ve needed to contact her about. She offered a face to face meeting but I didn’t see a lot of point just to say hello, and she offered a referral to a neuro physio but I’m doing fine with the company physio.

I’ve got PPMS so I’m not eligible for DMDs: I suspect if I was on DMDs I’d have had more contact with her.

10

Thanks Mitzi,

I am waiting to discuss DMD’s so hopefully won’t have to wait much longer. Sorry to hear about your diagnosis and I hope you are doing ok. Sounds like she would be there if you did need her which is good.

Diane x