Last reply 2 weeks ago
First call with MS nurse – what to ask?

Hello you lovely lot. I was diagnosed with RRMS on July 24 over the phone and have my first phone appointment with my MS nurse next week. I’m not a huge fan of phone appointments – would be so much nicer to meet face to face – but covid means it’s all by phone. Anyway I want to make sure I make the most of it and I’d love your advice about what I should be asking / getting out of it…

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vixen
3 weeks ago

Hi @henrietta. Have you been advised on a DMD yet? You could ask for her email as well as phone number; some people do struggle with getting hold of the MS nurse. Ask her how often you will get to see the neuro for routine appointments, and how often to expect an MRI. You could also ask what clinics and therapies are open to you, and how you’d get a referral. This could include counselling if needed, physiotherapy. Hopeflly others here will give you more ideas!


henrietta
3 weeks ago

@vixen Great tips thanks especially to ask when next MRI will be. MS consultant offered me Tecifidera or Aubagio when he called me with diagnosis and I’ve opted for Aubagio. My next appointment with him (still by phone) isn’t until July 2021.


watsoncraig
3 weeks ago

Hi @henrietta Write yourself a list of all your (be honest) symptoms and suspected symptoms (your nurse will help confirm if they are MS related)and a list of ALL the meds/supplements you take. Use the “Buddy” system on here to look for others who live with this thing and can help


vixen
3 weeks ago

Hi again @henrietta; look up Aubagio in the search box above for previous posts; this might generate some specific questions to ask the MS nurse 🙂


henrietta
3 weeks ago

@watsoncraig thanks – hadn’t thought of noting down supplements etc, good idea

@vixen will do, good idea thanks


henrietta
2 weeks ago

@watsoncraig @vixen Just wanted to say thank you again for your great advice – I had a brilliant one hour long chat with my lovely MS nurse and got a lot out of it thanks to your tips. Also had my DMD Education call and am now feeling very supported and cared for 🙂 Bloods being done today to get me started on a DMD, so it’s all go after the slightly weird hiatus since dx on July 24 x


vixen
2 weeks ago

Oh that’s great @henrietta. Hopefully you will have the number of the nurse too; I used to call quite often to check on something. Good luck with the DMD! x


tracey1982
2 weeks ago

Well I’d suggest making a list of questions you want to ask when your sitting down and one pops into your head just write it down on a piece of paper


tracey1982
2 weeks ago

Personality I found vitamin b complex to be a good vitamin it’s supposed to help brain function


henrietta
2 weeks ago

@tracey1982 good idea to write the questions down as they pop in to my head as I tend to forget them otherwise 👍
Not taking vitamin B complex – must get some. I’m taking vitamin D like most of I guess…


tracey1982
2 weeks ago

Yes after I found out about possible ms they found out I was vitamin D deficient. Only reason I suggest vitamin B complex is I looked up about ms before I was diagnosed and said vitamin B helped! Fingers crossed no other major attack since 2018 so may of helped 🤷‍♀️. Just started taking cranberry tablets to because I’m prone to uti


itsmewithms
2 weeks ago

With so many of his visits changing to Telemedicine Dr Boster has put out some tips on how to make the most from each visit. I found this so helpful. I agree with him that even after Covid there are so many advantages to televisits. They are more often on time and not missed, they are such lower stress for people struggling with mobility and transportation and sometimes are even more valuable than the in person visits. I think even after the pandemic some visits will remain telemedine…maybe my annual appointment will be in person and my 6 month check-ins will be telemedine.

I had an appointment earlier this spring that was telemed that went ok. Then he wanted me to get up and walk 10′ away from the computer…I didn’t have it set up anywhere that he could see me for 10′ so I made sure in my fall apointment I was setup for this request and then he couldn’t get his video or audio to pick me up! so frustrating – so we had to set up an in-person visit which actually worked out fine as they needed to take the blood samples anyways for the pre-labs for my next ocrevus infusion and could just do that then.

So-make sure they can see you in good light, can see you get up and move. It is quiet and you are not distracted, etc. Dr Boster has some videos on recommendations and has changed his appointments to this format so his recommendations from a Dr’s point of view were helpful https://www.youtube.com/watch?v=yNv7PBmwE_k&t=9s

As I am 55 and know that Vit D3 absorption decreases with age I requested my level be tested in the spring to make sure the two 100s that I am taking a day is enough and I was tested at a “70” and we should be (according to Dr Boster) between 50 and 100..so- I am just right 😉 but what you need to take to get there will be very personal. As it is required to maintain our D level for MS patients I followed up with insurance to force them to pay for it as they initially denied-


henrietta
2 weeks ago

@itsmewithms my appointments have been phone ones, not video – not sure if I’ll get videos ones at all. I’ll have a look at the Boster vids on telemedicine though as all info is useful. Mind you I’m very lucky in that I’m not (yet?) having problems with mobility plus my hospital- the National Hospital of Neurology here in London – is a 20 min bus ride away, so as soon as they restart face to face appointments I can get there easily, in fact I was there just yesterday for my pre-DMD blood test.

I had no idea that Vit D3 absorption reduces with age. As I’m 56 I’d better get my levels checked as I’m not sure they have been so far. I don’t think Vit D deficiency in childhood was a factor in my getting MS though as I was brought up in the Middle East and Greece… still I’m taking it now just in case…

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