pikilily 07/12/17
Last reply 4 months ago
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

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Anonymous
4 months ago

Hi @pikilily (Emma) generally the first appointment is for the nurse to get s feel of where you are with your MS. They will usually ask a combination of, how are your symptomss & how your tolerating any MS meds your on. They will ask are urinary & bowel movements in order, is swallowing ok, how’s your mood. They will also likely ask about your diet & your excercise regime. Much of it is box ticking but the data is fed back to your neurologist, so useful. If you have concerns about your MS you should ask about these. They will probably give their number so you can call in the future if need be. MS nurses can be invaluable & hopefully you’ll get a good one, although I’ve never met any other kind! Good luck with your appointment!

Craig


stumbler
4 months ago

@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
4 months ago

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


vixen
4 months ago

Hi there. I had the same problem as you in that I’ve never eaten breakfast and lunch is hit and miss. But because. I wanted so badly to minimise side effects of Tec I had to learn to eat breakfast which was a killer! I started with a big bowl of muesli and full fat milk. Now, I have Greek yogurt, nuts and berries which constitutes either breakfast or lunch as I eat it about 11. Evening meal is around 8 or 9. I think ideally I’d like to balance them 12 hours apart but it doesn’t really fit in with my life. I think you are supposed to take at least 6 hours apart and never double dose if you miss. Since taking Tec I have completely changed my diet to that of Keto. I’ve also lost the weight I put on whilst being ill and awaiting diagnosis so that’s been great. Good luck, be strong and steady! X


pikilily
4 months ago

Thank you All, and thanks for the pointers.
Yeh, I know that my diet is appalling, but I feel that this may be a ‘kick up the bahoochy’ to get things in order. As much as it makes me gag I have already started having a wee bawlie o’ parritch every morning. Hard to swallow but its a start….at least i have five or six weeks of ‘training’ before I start the meds.

@stumbler, the consultant decided that this was the best med for me. I have a blood clotting disorder which precludes me from having any of the meds that can lead to ITP. ( I have plenty of platelets- they just don’t function properly), or the injectable ones that can lead to bruising. At least I can alter my eating habits..LOL.

I will just learn to organise myself into some sort of pattern. When I am working a full day shift I get up at 5am leave usually about 6-6.30 having fed, rugged, put out, and mucked out the horses. and the got myself ready. Its a finely tuned timing. I usually don’t get home until between 8.30 and 9.30 (depending on how far away the work base is). Then I bring the horses in, feed them, do water and haynets….before I get even a cup of tea. As many folk know, often nurses don’t get breaks, and barely have time to pee. Luckily i usually only work one full day shift per week, so its do-able.
I am going to have a risk assessment chat with an Occy Health type character from the company tomorrow morning..so we will see what that highlights.
cheers Emma T x


potter
4 months ago

You don’t have to eat breakfast food in the morning, some people have a piece of toast with peanut butter. You just need to have some food in your stomach before you take it. I am starting my 5th year of Tecfidera, I make sure that I take it in the middle of the meal. If I remember to do that I don’t have any problems, I usually have a bowl of cereal with fresh fruit and nut milk for breakfast. This might be a good time to start developing a healthy lifestyle. Potter

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