@pikilily 

Last reply

pikilily

First Proper MS Nurse appointment

Hiya, I have now got my first proper appt for the MS Nurse next Wednesday. (which happens to be at exactly the same time as my OH has his prostate biopsy- such fun !!, luckily we will both be sitting in the same waiting area, LOL) I would like to ask people what questions they covered at their first appointment. I realise that these appointments are precious time and I don't want to waste the Nurse's time. I have the literature, but its the individual questions I am interested in. I will be starting Tecfidera in the new year - assuming that my recent blood results are satisfactory. What support to I have a right to request? *A bit of back ground*. I have a dreadful dietary pattern - I HATE eating breakfast, it make me feel quite sick. I tend not to eat lunch either. Often if i am going out then I can skip the evening meal. However, when I do eat its plenty of homemade fresh, often homegrown fruit,veg and meat (home produced pork and lamb). I can NOT eat plastic foods, ie, fake butters, fake yoghurts, over processed cheeses, anything with sweeteners in it. I have a very active lifestyle, 2 horses, 2 dogs, cats, hens, occasionally sheep and pigs, felting and other arts/crafts, working (Nurse), play fiddle out several nights a week. The kids are grown up. My sleep patterns are all over the place, after years of doing night shifts. I have recently been working day shifts to try address this issue, and try to be home by 1 am when out playing music. I don't really drink alcohol- well lets say a couple of drams a month. I do smoke- and do use the puffers to control this I am a tad overweight. I don't get stressed, or particularly anxious about things. One could say, I am quite pragmatic about dealing with crises - that's the Nurse training, and a lifetime of animals throwing major emergencies my way!! Oh dear, reading all that- I am a disaster.. ;-) Big lifestyle changes will have to happen.. thanks for any help Emma T
@Stumbler

@pikilily (Emma) , as suggested above, the first meeting is a "getting to know you" type of meeting and how you will work together in the future. Your MS Nurse will become your first point of contact regarding anything MS, so ensure that you get telephone numbers and e-mail address. The management of the Tecfidera does need to be discussed. One of the potential side effects of this drug, which is taken twice a day, is gastro-intestinal upset. This is avoided by taking it with meals. Given your breakfast habits, or lack of them, you have to question whether Tecfidera does fit your lifestyle?

@cameron

I would definitely ask about communication channels with your neuro team. It seems to vary according to area - I'm lucky in that the hospital's MS nurses are on the end of a phone and can make direct referrals to the relapse clinic and other MS services within the hospital. How would this work with your team and have you been given all their contact information? You can't know at this stage how things will pan out, but you can be pretty certain that there will be issues (hopefully minor!) that will need talking out/treating. Lots of luck with this. x