Hi Does anyone else feel fobbed off whenever they contact their ms nurse? Apart from a couple of routine scheduled appointments I’ve not had that much contact with the ms nurse but on the couple of occasions I’ve felt it necessary to call her I’ve just came off the phone feeling fobbed off and unsupported. Is it me?? I’m feeling pretty alone in coping with this horrible illness at the moment. I don’t feel it’s fair to be whining to my family all the time. Where else do you turn to? I’m just trying to understand how to cope with ms and when I should be concerned about things but she seems unable to answer my questions. Her stock answer seems to be, give it a couple of days, I’m sure you’ll feel better then!!! Aarrrgg!!! Sorry for the rant. I’m not in a very good place at the moment. Thanks for listening. A M. Xxxx
I felt completely abandoned when I came out of hospital. When I reported another 2 relapses to my MS nurse she passed the information on to the neuro who just said we will wait and see how you get on, so not much help. She is very nice and gave me all the initial info on MS, but like you during a relapse just expresses a polite interest. Never an offer of steroids or any help with symptoms (eg physio, drugs).
Hi I got the same response as you! Do you have a good relationship with ur doc. My doc is very proactive she phoned the ms nurse and I had an appointment the next day to see her. I came away feeling I hadn’t gained much. But the following week I had to see my neuro. So def thinking having ur go involved helps. X
My experience has been much the same. I was desperate to switch or increase my medication, because my existing regime wasn’t addressing the pain. I wasn’t assigned an MS nurse, so my GP chased to find out whether I was supposed to be. Eventually, after a long wait (weeks), when the excuse was the number the GP had given wasn’t correct, someone did call me, but all she offered was “a cup of coffee”, which I politely declined (I wasn’t going all the way to the hospital, for a load of: “there, there” and a cup of coffee - I desperately needed a change to my treatment, not a hot drink and a pat on the head.) When I didn’t go along with the “coffee” suggestion, I was offered physiotherapy, which I also didn’t want, but accepted, to show willing. As suspected, this also turned out to be a waste of time.
Eventually, my GP prescribed quinine - which worked! So really wish we had just tried that in the first place, and cut out the MS nurse and the physiotherapy altogether. It definitely does help to have a good relationship with your GP. I think mine spent years thinking I was a bit of a fusspot, but when I was finally diagnosed with MS, her attutude changed completely, and she realised that for someone with a serious condition, I’d hardly made any fuss at all, and was a rare visitor to the surgery.
Although rather reluctant at first (probably because she’s only ever had one or two other MS patients), and seeming to seek the neuro’s permission all the time, she’s eventually been willing to take the initiative and prescribe things, when all the MS nurse offered was coffee. I’m not somebody that wants to chat about it - except here! If I ever contact the NHS outside routine appointments, it’s because something’s seriously in need of fixing, not because I’m looking for moral support.
GP has eventually proved more proactive than the hospital with that.
Tina
x
like others have said gp
but ur thread (and other ones) have made me think…
there is another thread about increasing ms nurses-why should those that hold the purse strings bother if so many of us find them ineffective? i am also aware there are brill ones out there if u are lucky enough to find/get them.
decisions decisions…
take care op and sorry i can be of more help-i find this site more helpful that ms nurse… ellie
Hi, I think you and another poster on here go to the same hospital as I do, so perhaps shouldn’t say too much more. However, I will say that I find the nurses an extra layer of beaurocracy before you get any help, all they seem to say is to see your gp so as well doing that in the first place. To me the nurses like to create work for themselves, my neuro told me to see her once a year but she always says to come back in six months. I just tell her I’ll check with neuro and she backs down to a year. Its almost like their justifying their positions, imagine if they do this with every patient. On a positive note they are polite and pleasant. Sorry, said more than I intended.
I must be lucky as I feel I have a good relationship with my MS Nurses. When I ask for help, be it steroids, physio or neuro appointment, I tend to find that is agreed with. Having had ms for 11 years, I tend to be able to tell the nurse what the problem is (relapse / new symptoms / impact of a virus) and knowing what has / hasn’t worked before, I ask for what I require to help with the issues and these are agreed with. I have only contacted the nurses on a few occasions and find them very good. Neil
I must say as well it depends what you say to them. I forgot to mention at the start saying that weakness was worse. Said that at the end that got renewed attention so possibly it depends what information you give them. And in all fairness I got pretty much an instant neuro appointment. I suppose I’m very new to all this And still learning. I noticed my calf muscle on the opposite side got weak I honestly don’t know when this happened I remember noticing it but didn’t think it important enough to tell anyone. So I can be quite dense at times. I’m not a moaner. I know I may be driving some of you mad the amount of questions I ask but basically things are happening all the time and I guess I’m trying to gain valuable infirmary I from you all as to what I should be saying and to who. Em x
I learnt along time ago being blunt & stating what you feel or need works , ive only seen mine twice & been told see you in 6 months but in all honesty i found her to be polite & informative but also ive been in pain every day for 14yrs and lived on painkillers as i had to fish or my kids & wife went without i only gave in when it got so bad some mornings 2am i was crawling to my van & onto our boat for 12hrs of work & the day i collapsed & my world went to pot was the morning of the twin towers , my point is i suffered for years & said nothing , which is why nothing was done now i speak & speak until i am heard & make them listen which ( i appologise now if ever i come across as harsh) now means i pull no punches or sugar coat anything , if 1 part of your treatment cycle is breaking down demand a new piece to the puzzle just remember your not 2nd best & nor should you be treated as such request a new 1 until your happy , mine seems to me to be the best part of my treatment cycle ive had in yrs i have an awesome Dr too.
I hope things look up soon for you AM
Respect sheep
I’m lucky too. Mine are absolutely amazing, as is my Neurologist. Sometimes when I read on here I can’t believe how well looked after I am compared to some of your experiences. Ive been seeing mine since I was a teen, so they’ve seen me ‘grow up’ get married, have a daughter etc alongside the relapses, longer term symptoms and so on. Generally, I’ve seen the same specific nurse, but most of the team will take the time to say ‘hi’ if they’re passing through the waiting room I feel that they ‘know me’ to some extent - which I think makes a big difference, in terms of me being able to approach them for help. It’s kind of like traditional nursing rather than a numbers game
Oh yes, I agree! Whatever I ring to ask about the stock response seems to be: How’s your bladder? You might have an infection. Take a urine sample to your gp. They don’t even give me chance to answer the bladder question. I’ve given up ringing at all now.
Ooh I don’t know yet. I emailed them to say which DMD I wanted and they replied saying it would take 4-6 weeks but to contact them if I needed anything. I emailed again to ask them about vitamin D - they didn’t answer. I emailed them today to check how my DMD prescription was progressing. I’ll let you know if they answer…
Hi everyone Thanks very much for all your replies. I certainly don’t feel completely alone now. I suppose the biggest problem for me is that my ms seems to manifest itself in just a general feeling of yukkiness and tiredness rather than a very obvious relapse, eg numb leg, pins and needles. Which obviously means that the ms nurse and the Neuro seem to dismiss my concerns. It’s not that I don’t experience numbness and pins and needles, I do, but I am lucky enough that they are symptoms I can pretty much handle, it’s the grottiness and tiredness that I find difficult to cope with. And it’s not that I feel like this all the time, up until a week ago I was doing great and was feeling quite positive about the future. I had some energy back and was back feeling some enthusiasm for life. Then last week it all came crashing down and I was back feeling the way I did last year when I was struggling out of the relapse which led to my dx. This is what led to me phoning the ms nurse for only the second time since dx and as I mentioned earlier was obviously a waste of time. I am about to make an appointment with my gp to discuss how I’m getting on with the modafanil he agreed to prescribe for me so will see if he is any more help and support than the ms nurse. It’s been really interesting to hear all the different opinions and experiences people have had with their ms nurse and it’s heartening to hear positive stories of people who are getting the help, support and treatment that they need from their ms nurse. I have to agree with what Ellie had to say. It’s certainly given me some food for thought and makes me wonder wether the role if the ms nurse needs to be looked at with a view to changing things sothat they are providing the kind of service us mser’s are looking for. I too have found this forum more helpful and has provided me with more information than the Neuro or ms nurse ever has. Thanks again everyone for your replies. Ann Marie
Sorry I think I went anon with my above post by mistake oops!! Ann Marie
When I was first diagnosed I was basically ‘dazed and confused’ - as it seems all of us were/are.
My MS nurse was useless. I needed solid answers, and she could only say ‘it might be’. I couldn’t cope with that at all. No DMDs or steriods were offered to me. I was diagnosed decades after my optic neuritis started and I’d progressed to SPMS by then. After mobility problems hit, basically. So nothing was available anyway. I was told I ‘wasn’t suitable’ for me, but I didn’t understand why and was too stunned by it all to ask.
A few years down the line, I find my MS nurse very useful and supportive. She has been an access point for things like orthotics, urology for example. I am at the stage where the offer of a coffee and chat would be brilliant! But definietly not a few years earlier.
I think it really depends on where you are along the process of accepting our diagnosis and the total unpredicably of MS. I was in denial for many years! Then ‘dazed and confused’ for years after I was finally diagnosed and couldn’t ask questions because I was in a spin!
wonderquine, I hope your MS nurse becomes more supportive and useful to you soon. Don’t give up on her yet!
take care,
Ellen
Mine replied! I’m getting injection training on 3rd April. Yay!! Now just got to hope they’re nice
My MS nurse is now on holiday when she told me to contact her with my decision on which DMD to take 
In Cornwall, I would consider that we have best (MS) nurse cover in the (UK), nothing is to much trouble, I have six month, home visits, with contact details, just in case I need them sooner.
They are brilliant.
Take care.
Chris R.
I. El. (Eng). (Rtd).
That’s great news Wilf. I like the idea of being able to email her if I have a query but have never been given this option. Maybe I should ask her if it’s something she might consider. Ellen, a lot of what you had to say rings very true. I was only dx 17 months ago and although I don’t feel I’m in denial I am certainly still in the dazed and confused stage. Maybe I’m being unfair and looking for answers that she can’t give me. I suppose I thought that once I was dx there would be treatments available that would help alleviate my symptoms etc and I’m finding out that that’s very often not the case. Thankfully I’m having a better day today and am feeling a bit more able to look positively into the future. Long may it continue. Ann Marie xxx
I’m reading this thread with interest as I stumbled accross it whilst looking for something else. It’s interesting to hear most people saying that the MS Nurse isnt very useful. I called mine about 2 months ago now to report a sore foot and stiff lower legs and she told me to go and see my GP. My GP is lovely and, after a serious problem that involved emergency surgery last year, neither of us assume that all of my problems are due to MS. How the heck do you know where the MS ends and everything else begins? I decided after my last lot of steroids a year ago that I wasnt going to take them any more as they made me feel ill. Now, 2 months after calling the MS nurse and two weeks after starting a course of NSAIDs prescribed by my GP, I still have sore feet and I feel rubbish. So am thinking I may as well have the steroids since I feel rubbish anyway, even though I have been told that I may have Fibromyalgia. Confused, annoyed and not knowing quite what to do next! 