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First MS nurse appointment - Suggestions?

Hi,

I have my first MS nurse appointment in a couple of weeks and I was wondering, to make the most of it, what I could do to prepare for it.

What sort of things will be discussed, and what are some of the questions that might be considered beforehand; both for me to ask, and what they may well ask me.

It’s another month after that before I see a consultant, for the first time. Since I just had a relapse a week ago, (minor, but fulfilled the definition), do I need to be more insistent on being seen in good time, or is it OK to stick with the timings as scheduled, in peoples’ opinions?

Many thanks for any words,

Nev

Hi Nev,

I have an appointment with my MS Nurse every six months. I complete a questionnaire before each one describing any difficulties with the following…

  • Pain
  • Mobility
  • Communication
  • Eating/drinking
  • Fatigue and sleep pattern
  • Bladder
  • Bowel
  • Mood
  • Memory
  • Sexual function
  • Ability to wash and dress
  • Ability with activities including leisure, at home/work

What I would like to achieve from the meeting

Information on;

  • MS
  • Drugs used for MS
  • Treatments for MS

Advice on;

  • Symptom management
  • Diet
  • Exercise
  • Benefits
  • Support at Home

List of medication that you are taking.

and Letters from GP or specialists.

That’s a pretty good start.

Regards,

John

Thank you John, that is indeed a pretty good start, and if I got to the appointment without those sort of notes, it would add a great deal of unproductive time. I will make a start so I would have the bulk of this info, to hand, when it’s needed.

Cheers,

Nev

Thanks John. This is really helpful for us newbies.

I must have an exceptionally good MS Nurse if yours aren’t asking these questions!

It may indeed be that you do, but so far, I have not seen one!

I have my first appointment in a couple of weeks, so we’ll see.

Thanks again for the information.

All the best,

Nev

I’ve got PPMS so my MS Nurse, Liz, knows I’m only going to change for the worse. She checks I’m taking the right meds in the right doses, she has referred me for a wheelchair assessment and recommended physiotherapy and a neurophysiotherapist appointments.

I was overdosing on one of my drugs, Liz put me right. I’ve now got a wheelchair. I’ve got a set of exercises tailored to my level of disability which keep me more mobile than I would otherwise be.

My GP told me that when it comes to MS he just does what Liz says.

I always take my wife with me to the appointments as Liz understands that my MS affects her just as much as it does me.

If your Nurse doesn’t look after you as well as this, ask him/her for whatever you think you need.

Regards,

John

I think Johns MS nurse is incredibly thorough. For some people is might be a bit too thorough.

I had the same MS nurse for years and we just used to chat about any stuff that crossed either of our minds (it seemed). At various times we talked about DMDs, relapses, steroids, physiotherapy, benefit claims, various neuro appointments, a variety of other things that I can’t now remember.

I now have a new MS nurse who I knew at the bowel and bladder nurse, but she came the other day for the first time as the MS nurse. (Btw, in my area they always come to my home.) She wanted to discuss everything from diagnosis, to medication, to neurologists, physio, progression, bowels, SPC, it seemed like the whole gamut. And quite organised in that she had a new folder, subdivided into different subjects so as not to miss anything out.

When it’s your first MS nurse appointment, I would expect to go through all your symptoms, what your doctors have told you, what tests you’ve had, what your expectations are, what questions you have. In a way it’s just a chance to meet and get to know each other a bit as well. Chances are you’ll be seeing a lot of your MS nurse so it’s good just to get to know each other a bit too.

Sue

Thank you both, John and Sue.

Because my wife is a teacher, it’s not easy for her to get a day off, so I think it more important that of the 2 meetings at this time, she comes to the consultant one. Perhaps it might be better to do both, if she can? Even if she cannot get to future MS nurse appointments, at least she knows what it’s like.

Having the MS nurse come to your home seems like a luxury! Although I can imagine downsides to it as well.

Your last paragraph Sue, impresses upon me that hopefully the school can spare my wife 2 days off, as it seems right that she should be there for that.

Thank both again,

Now to fill in that questionaire in readiness!

Nev