kevin_hives 14/04/17
Last reply 10 months ago
MS Nurse contact.

How often do you see your MS nurse and how easy are they to contact. I was diagnosed in July 2016 with RRMS and I see my ms nurse and neurologist every 6 months. I have seen the ms nurse twice in Oct 16 and March 17 but trying to contact inbetween these dates has been nigh on impossible. In fact I emailed my nurse on 20/3/17 and have still to get a response. Ringing them goes straight to an answer machine so the only other option is to email it either method is to no avail. Does anybody else have theses problems.

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stumbler
10 months ago

Hi @kevin_hives and welcome.

MS Nurses are over-workde and, I dare say, are underpaid too. They only deal with MS patients and probably have a good few hundreds of MS patients in their area (https://www.mstrust.org.uk/a-z/ms-specialist-nurses).

Persevere with trying to contact them, but appreciate how busy they are. And that they take the occasional holidays. E-mail is possibly preferable as you can include details of your issue, which will save time.

Or, ask us here. We have a range of personal experience to call on. 😉


niccis
10 months ago

MS nurse every 6 months. The last time I saw my Neuro was June 2016 and I’m not scheduled to see him again until Jan 2018 so if say you’re doing well if you get to see yours every 6 months!

I have the same problems as you with getting hold of someone on the phone. They always phone back eventually but usually when I’m teaching and can’t answer the phone! But as @stumbler says, they are horribly overworked. Persevere. If all else fails and you urgently need to speak to someone, I usually find phoning my Neuro’s secretary speeds things up a bit 🙄


laineybob101
10 months ago

Hi, I’ve been on tecfidera for 5 wks now and have had severe side effects since day 1 – I rang and emailed ms nurse ( Monday)- she wasn’t back until Friday but did contact me back, and told me to bear with it then 5 wks later when I decided I couldn’t cope anymore ( last Monday I rang but she’s out of office until tuesday 18th! I appreciate they are over worked and have lots of patients, but we should have some kind of support back up!!!
I was at my wits end and rang the neurologist who luckily was in clinic so rang me back ( he works between 3 hospitals) and he has altered my medication straight away as side effects were so bad. If he wasn’t there I don’t know what I would have done, I was so down and felt so unsupported- felt very much like here have these licenced drugs and get on with it x


cocofloyd1
10 months ago

Yes same problems. Quickly seen after diagnosis for introduction then tried to contact by phone had same problem with constant answering machine, during a relapse, emailed several times no response for over a month so I contacted neurologist and surprise surprise was called the next day! By this time the contact was pointless as neurologist had sorted out issues. I know they’re overworked but a quick reply to an email takes minutes.


vicy
10 months ago

I’m in Norfolk & have spms, I see 1 of the 2 neurological support nurses every 6 months with seeing the nurses alternatively. They insist that we go to them, which I can understand, as then they can see how you are physically coping with walking etc. Only needed to email once when I needed a supporting letter for an esa claim. So no problems but then I’m not o. dmd,.


tanningstudio
10 months ago

Always found them brilliant! Have arranged appointments every 12 months but have found email an easy way to get in touch and they’ve always got back straight away – think unfortunately it depends where you live – in some areas there are no ms nurses at all – I count myself lucky on the support I get


daniel2025
10 months ago

I don’t have any issues. In James Cook there is two ms nurses but they are very effective and if one is on leave the other one covers her patents until she’s back.

Every time I email I get a answer same day. I have to see my ms nurse monthly at present as I have been treated with lemtrada but I see my neurologist every six months unless something comes up and I may see her sooner. I seen her in February as I was having round two of lemtrada and I just seen her this month as I caught a infection I’m ok now but my neurologist decided to rush me in as she wanted to make sure my symptoms are OK and there has been no change to my ms symptoms.

All in all James Cook are very efficient and I never have issues contacting them.

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