Had my first appointment this week and wondered if my experience is the norm, if I am just unlucky who I have been assigned, she was having a bad day, who knows? Telephone appointment which she had quite late for. She only asked me one question about how I was getting on with the medication I have been prescribed to help with nerve pain. She then tried to end the call. No prompt to try and discuss anything else, ask other questions, well anything at all really. I had to ask her about other symptoms I have been experiencing and question her about starting DMT treatment. She couldn’t provide any further information about the DMT’s and just pointed me to the internet and paperwork I had already been provided and read. She said she would do a referral to the DMT coordinator to deal with for me.
Overall just a really disappointing experience and left me a bit meh!! So…is this the usual experience? Thanks
That sounds like an awful experience and that MS nurse is not upholding the requirements of the position held. However at least you did manage to be allocated an MS nurse which at least is something despite the abruptness. I’ve no neurologist and no MS nurse so if I have any issues I have to go through my GP and it’s difficult to get an appointment. I feel abandoned by the NHS as the Yorkshire Hospital Trust discharged routinely seeing MS patients over 10 years ago due to their financial situation. Completely abandoned then.
Mary 
My goodness that’s awful. I don’t understand how they can be allowed to do that. So sorry you are not being supported properly. As if you don’t have enough to deal with…terrible!
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Not at all usual for me. I have an MS Nurse who i see every 6 months.
I don’t have a DMT coordinator and have never hear of one . Do you know what that is and what his/ her role is in dealing with MS patients?
I do know that there just aren’t enough MS Nurses or Neurologists in the NHS so I guess it’s possible that the phone call you received was either from a really busy MS Nurse or perhaps it was simply a junior nurse who had been asked to check with you on the medication?
Who prescribed the medicine?
Are you in touch with other people with MS in your area? I’m thinking that if the Trust is unable to provide MS patients with neither a neurologist or MS Nurse then they are at serious odds with Nice guidelines and all of you ought work together and with your local MPs to ensure that the Trust provides the proper and necessary support and care. Have you or anyone been in touch with MPs?
Depending on your DMD, I think the DMT coordinator is the supplier: I’m currently on Kesimpta, not sure for how much longer due to recurring infections, but Parmaxo usually call every few months regarding another delivery of syringes and sharps bin. 
Regards,
JP
She said the DMT coordinator was going to be the personal responsible for prescribing and arranging the medication.
She was an MS nurse as she was the same lady who attended the appointment when the consultant d confirmed my diagnosis and prescribed the Gabapentin. Probably just very busy then.
I am sorry you had this experience , it sounds like she has too much to do and not enough time but that should not be impacting on your care . I wonder if it ismpossible fornyou tomsend an email to let her knowmhow you are feeling and that you have some questions to ask .
I think phone appts contribute to this a little , uou dontnhaventhe same relationships with folks. I wonder ifnyou have general questions then you can call onemof the charity helplines some of whom have nurses i think , my daughter has just been diagnosed at 25 and we are meeting with the nurse and consultant next week so wjo knows may have similiar experiences , i think its important to say how you feel and dont be afraid to do this , hope all goes well for you
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Just to say that as @cobweb4moth says, if you have particular questions and concerns send an email to the Nurse . I do that from time to time and get an answer ‘relatively’ quick although they answer can be fairly short ( another result of lack of MS nurses).
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Hello again ,as @Hank_Dogs says you may not get a long reply . However your nurse will answer any questions you have posed to them at the next appt/phonecall .(I am a community mental health nurse ) We are often bound by information governance which stops us replying with too much info but it is so helpful to have the concerns/. Questions that people may need answering.all the best
Thanks all for your replies. I will send an email with my questions and see if I fair any better.